Mary
was also capable of writing in a more academic vein, here
is the text of a lecture she gave to postgraduates at the
University
of Warwick
I am not an expert in the various
theories of social work and social policy. But I am an
expert in the practical aspects of living with a severe
disability. Having, myself, been through most of the
processes of acquiring a disability, and approaching the
various authorities for help with benefits, practical
equipment, transport etcetera. before coming to my
current position. I have, since, extended this experience
to helping other disabled people, often with disabilities
very different from my own with advice work, counselling,
advocacy and campaigning.
I would like to begin with a quote from Martin Luther
King
"Morality cannot be
legislated, but behaviour can be regulated.
Judicial decrees may not change the heart, but
they can restrict the heartless"
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So what is discrimination?
As I understand the language, to discriminate is to make
a decision or choice, either in favour of, or against,
something. Prejudice on the other hand, is a preconceived,
often wrong notion of something. Usually based on
ignorance, thoughtlessness, or lack of information to the
contrary.
The net effect when taken together, is that negative
discrimination is any act or language which tends to make
one person of lesser worth than another. Dehumanising or
denying full adult status. It is confirmed in the
discriminators mind that they are right, and that there
is good reason why the other person or group should take
second place in their scheme of things.
Discrimination then, is any act which
diminishes a persons status, rights to do
anything, or go anywhere which would be normal
for a person in similar circumstances without the
impediment of: disability, race, religion, gender,
sexual orientation or class, which are cause of
prejudice. |
So before I attempt to explain how we have to get by in a
world where it is legal to discriminate against people on
grounds of disability. I will ask you whether any of you
know of any legislation in force, or what has been done
to introduce it.
Anti discrimination legislation,
Jack Ashley introducing the civil rights
disabled persons bill 1992 stated: "This
is the sixth attempt to place anti discrimination
legislation on the statute book since the report
of the committee on restrictions against disabled
people (Corad) 10 years ago."
In fact going back to the 1970's there have now
been twelve attempts to gain anti discrimination
legislation on a par with sex and race laws with
the thirteenth proceeding even now. The Authors
of the bills are sometimes well known, sometimes
backbenchers who have sunk harmlessly into the
pages of Hansard. |
What they mean by better prepared is indicated by the
progress of those few bills which have made it through
parliament.
In employment infringements of the quota scheme whereby
companies which employ set numbers of people should
employ 3% of people registered as disabled with the
department of employment have seen only a handful of
prosecutions and those resulting in derisory fines.
Alternatively the main gist of the bill has become
watered down with escape clauses and wording such as
"where practicable" or clauses have lain on the
statute books for years awaiting an indefinite
implementation date as happened with much of the 1986
Disabled Persons Services and Representation act, where
the excuse has been that the Community Care act
supersedes these with Citizens charters which are all to
often empty words and unenforceable.
Discrimination is often justified by M.P.s in parliament,
and it can be said that the concerted attempt to defeat
legislation is in itself an act of discrimination by MP's
who are no less prejudiced than the general population.
They are often prejudiced as the result of lobbying by
groups who have a real fear of losing privilege or of
incurring financial penalties, who wish legislation to
discriminate in their favour against disabled people for
whose needs they have had a long-standing history of
ignoring.
Fear of the unknown is one of the prime movers of
prejudice as we shall see again later.
For example there is a powerful builders lobby against
extension of building regulations
For example this City's Unitary development plan
originally contained a modest clause specifying that 4%
of new housing should have a minimum standard of
accessibility. The house builders were up in arms, it
would cost them, they would not be able to sell the
houses to non disabled clients. The government told the
City that the clause must not be prescriptive and could
only recommend.
Both Government and builders misunderstood the fact that
applying these standards to any house would have benefits
to everybody. E.G. wide doors, flat entrances and
interiors which don't echo like the inside of a swimming
pool, important to people with sensory impairments.
Indeed if the terms of the race relations act applied to
the language of disability, much of this campaigning
itself would often be seen to go over the line.
As an example of the sort of thing I mean. It was
reported in the local newspaper that a group of disabled
students from Hereward College were ejected from a
particular sporting club, in the belief that they were a
fire hazard, even after they had informed the club in
advance of their intentions to attend
I will quote from the letter I received when I took up
their case.
"As I said in the night in
question, the presence of several wheelchairs and
disabled persons was, in my opinion something
that was incompatible with a very busy evening,
with lots of people socialising in the area
concerned. My concern is for the business to be
operated for the good of the majority of persons
and on this occasion the disabled were a massive
minority, which may have led to upset later on.
Knowing the general public, and seeing the effect
that drink and music has on them, it concerned me
greatly, that handicapped could have been upset
greatly later on in the evening. Unfortunately,
some people can be very cruel, beastly and
insulting, therefore I asked them to leave,
taking all of the afore mentioned reasons into
consideration" |
This neatly sums up typical paternalism,
supposedly protecting the disabled people against the
harsh outside world. In reality masking a desire to
remove a group of unpleasantly different people from a
disco, because in all probability they were taking up too
much space.
The letter also acknowledges in a matter of fact way, as
if there were nothing wrong with it, the degree of
prejudice, of the clubs other users toward disabled
people.
Not so many years ago these would have been exactly the
same reasons given for implementing a colour bar.
Social Work, living in an Environment of
discrimination
Models
I am not prepared to offer a critical
account of the various Authors of the different theories,
as I have to admit that I am not aware of the original
work but only how it has come to be applied in actual
social work, very probably in a way the authors had not
foreseen or intended.
Medical Model versus
Social Model.
Perhaps the medical model is the original
model of disability which measures all forms of
disability as a disease, either to be cured or alleviated,
and sees everything in terms of a medical diagnosis
describing the cause of an impairment or malfunction in
the human body and its systems. It is not very helpful
because it is not possible to deduce from a simple
medical diagnosis, the actual limitations or loss of
faculty which will result from that diagnosis, yet this
is the starting point for a lot of legislation, for
example the most important piece of legislation we do
have has been called the chronically sick and disabled
persons act. And claims for most of the disability
benefits have been intimately tied up with medical
examinations and assessments in a way which claims for
other benefits such as unemployment benefit, old age
pensions and income support are not.
We do not actually need a doctor to
order transport, to arrange our social lives, to
take us shopping, or to provide us with a job.
These things need something else, an accessible
bus or ring and ride, accessible shops,
restaurants, pubs, and the acceptance of the
general public that disabled people are
essentially the same as they are. |
I can also vouch for the fact that hospitals are
not designed for disabled people. To be sure, for some
disabled people some of these daily living activities
might require special equipment. A magnifier to read, a
hearing aid, a wheelchair, sticks, special equipment at
work, adaptations in the bathroom and kitchen, but none
of these things are medical needs, they are engineering
solutions, which might be used equally by people with any
number of strict medical diagnoses, indeed some devices
like an electric can opener might be used by anybody at
all, nor does anybody who wears glasses or contact lenses
stop to think that these are essentially aids to correct
a disability, they are as often as not a fashion
statement. Yet occupational therapists remain a branch of
the medical profession. This way of treating us
discriminates, it marks us off as different, it
diminishes our status. What is more it tells us nothing
about disability
The Social model of
disability
There is more than one theory of social
work as I am sure you know. And some of these are
actually contradictory when applied together, Take for
example normalisation which I think was intended as a
means of avoiding the ghettoisation of services, but has
too often been an excuse not to provide special services
at all. The term is actually offensive to disabled people
who from their own point of view are already normal. On
the other hand integrated living, originally a movement
stemming from America has found its way into social
services locally as providing all the services for
disability under one roof, out of the way. Also by the
way it seems to be a convenient place to employ disabled
social workers, who contrary to popular belief are not
always the best to deal with disabled people.
To say that we have to access our
services via disabled social workers is a form of
apartheid no less, restricting our access to
services. Separate development leads to second
class service. |
This is particularly so if the Social Worker in
question has a different attitude to disability than the
client as there is always a Social Worker Client divide
and this is likely to overide the commonality of
disability. The situation is like that often portrayed in
a popular televison police drama, where the solitary
black bobby is always sent out when there is trouble at
the community centre and in return for his efforts
recieves nothing but abuse and cries of whose side are
you on from members of his own community.
This does not mean that there are not areas that do not
require input from disabled people however. There are
areas where a disability can be a contributory
qualification for a job. For example where my views are
needed to balance the views of non disabled experts in a
tribunal situation for instance. Or where my experience
of environmental barriers is wider than that of someone
who has never experienced them first hand. But that does
not mean I wish for my complaints to be dealt with by a
disabled person because they are supposed to have some
mysterious empathy with me. Even when complaints are made,
it is the same department which will be judge and jury.
It is difficult for a Social worker to investigate a
complaint against another when they might be aware that
they have fallen short themselves, how much more
difficult then to be an advocate in this situation.
In one recent case the Social Services department sent
out a disabled Social Worker to investigate a complaint
unaware of the implications of this. Was there some
assumption on the departments behalf that bad news was
easier to take from a disabled Social Worker? Certainly
the Social Worker did not approach this task with the
necessary degree of objectivity, as a supposedly well
integrated individual this Social Worker did not
understand the aspirations of the client who was told she
should know better than to expect certain things because
she was disabled because the Social Worker did not expect
as much from Society.
People first
Disabled people are not a unitary group
of people, alike in all their habits and
aspirations. People meet with disability at any
age in their lives, yet the age at which
disability is acquired or the age at which it
first becomes necessary to draw on the help of
Social Services often determines the way it is
looked at. It also can determine the disabled
persons reactions to disability as well.
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Most theories are flawed for the same reason, they
do not look at things from the clients perspective. On
the one hand there is no earthly reason why anyone should
have to go to a social worker for items as diverse as
parking permits and toilet seats? Okay it may be accepted
that disability is no longer a disease, but it is still
regarded as a Social problem, to rank in the Social
workers casebook along truanting children and sundry
other Social ills which effect the disabled and
undisabled alike. This theory says that disabled people
are maladapted people who are the square pegs who have to
be refashioned to fit into the round holes of society,
normalised as it were before they become acceptable. This
is of course discrimination, accepting us as less than we
are.
Three ages
If we accept that there are three stages
of life: childhood, maturity, and old age.
disabled people in the popular imagination, in
social provision, and legislation are usually
stuck in one of only two stages, either children,
in education. or elderly when all people start
losing their faculties, there is nothing in
between.
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We are protected as children, as disabled children
we are moulded into the form society expects of us, our
expectations lowered, we should learn not to want the
things that our able bodied peers desire. People who have
been disabled since birth have sometimes said to me that
they regard my situation as worse than theirs, because I
have been able bodied and lost something they have never
known. Personally I would rather have something and lose
it than not to have it at all. Children are more
appealing to public than elderly people when it comes to
charitable giving, they make fewer demands, dependency is
acceptable in a child. Likewise when we become old our
expectations are also lowered. The cut off point for some
of the higher disability benefits is pension age. We
should not expect to be able to walk or see or hear
properly when we are old so why should the government
waste money on us.
Actually it would not be that much more
expensive unless we all lived to be 150. It matters not
if we have been disabled all our lives and made our peace
with disability, we are old and burdensome and we are all
treated the same. I would expect a person who becomes
disabled at this time of life to be treated differently
to myself as the process of accommodating to disability
is in fact no less difficult in old age than becoming
disabled in the prime of life. But the period when we are
most discriminated against lies between childhood and old
age, and this is the period when abled bodied people fear
disability most.
I am a disabled person in charge of my
own life and social workers find this more difficult to
cope with because I am too close to own situation. What
happened to me could easily happen to them. When dealing
with the elderly it easy to distance themselves from that
situation nobody admits to getting old and they are in
their prime. With children, it is a stage they have
passed through safely. But is almost as if my disability
were contagious. People have often said to me, that if it
happened to them they could never cope. It happened to me
and I have had to adapt.
Disabled people sometimes discriminate
against each other, some have devalued perception of
themselves particularly people with acquired disability
who have been conditioned by an able bodied view of
society for most of their lives who often go through a
period of "bereavement" for the loss of their
former selves perceived in terms of what they can not do,
not who they are. This happened to me and it was a long
time before I discovered that I could still use my voice
as I am doing now and I am still the same person as
before, maybe even a better person as I have shed my own
prejudices about disability which held me back.
Social workers were of no use in helping
me adapt to society, they could inform me about services
I could use or benefits I could apply for but the
majority of assessments for equipment and benefits
pointed out painfully what functions I had lost. Worse
still I have known of some professionals, who, when
dealing with disabled people with a progressive
disability assumed the worst outcome and told the client
so when the client was not ready to accept the fact.
Indeed nothing in life is certain and by painting the
worst possible picture they are not helping. It is better
to adapt gradually than to take the full force at once,
in fact it might never happen. This is something to bear
in mind when helping people apply for benefits, that the
approach to them is entirely negative even when the the
objective in mind is positive.
To recap discrimination prefers us to be
either children or in second childhood, to be
less than full adult members of society and as
unthreatening as possible. |
This is a relatively benevolent form of
discrimination, to put as objects of pity, to be
patronised, to exist for the benefit of someone else's
conscience, but what of the other leading player in the
theatre of discrimination.
The spectre of cost.
The spectre of cost underlines the
assertion that we are a burden to society. We have
already seen this in the legislation, as a cause for fear,
and worse that since we are less than fully human, fully
adult, we are somehow also expendable. In Nazi Germany
this was certainly so but this worst scenario has too
many echoes in current life to let me rest easily.
For example what other area of Social
Work has such a burden of cost to the user imposed upon
it. Many areas of Social Work are expensive, for instance
court appearances, the cost of Children in care,
fostering payments, however the mother or father who
cannot look after their children is not expected to pay
their cost in care, yet we disabled people are expected
to pay for respite care, if we have a carer who falls ill.
We are means tested for every kind of help, supposedly
ours of right, provided by Social Services. There is a
worse kind of discrimination besides this twofold
approach to different client groups. That is the direct
denial of services, or the refusal to inform fully, where
the social worker is aware of pressures to keep costs
down. Often an assessment of need is more concerned with
a calculation of means and although it is not strictly
legal, people are being put off requesting services by
being told, not in so many words of course, that they
will not get a service if they don't pay.
It is perceived cost of the
multiplication of claims against national insurance
benefits that drives the government into limiting their
availability and inventing and extending the mythology of
scroungers and social parasites to those people who, if
given enough resources may well be able to work, but
would nonetheless be unlikely to be employed without anti
discrimination legislation. Invalidity Benefit is to be
replaced by Incapacity Benefit and the cosmetic change of
name disguises the way in which the burden of costs is
shifted ever further from the insurance principle of
pooling social resources to loser pays all.
If we are too costly to maintain, this is
reason enough in the eyes of the budget makers to put us
on a lower priority. It also encourages the creation of a
mythology to justify their discrimination. In Victorian
times there were two categories of the poor. The
deserving and the undeserving. The able bodied unemployed
were seen as feckless and needed the fear of the
workhouse to motivate them. Now in this era, disabled
people, previously regarded as the deserving poor are
shifted into the feckless category who cannot be trusted
not to fiddle the system at any given chance. Rather than
being merely "In Valid" they become malingerers.
Naturally this does not help the publics perception of us.
We are expected to live on charity and be grateful for it.
For integrating us into society we have to rely on
peoples benevolence and on our attempts to educate them.
In all 42 recommendations were made by
Corad, the Committee on restrictions against Disability
and as every year passes by more and more is lost because
there is no legal framework to enforce consideration for
disabled people against the onslaught of governmental,
and local authorities, Environmental and Fiscal
legislation.
Peter Large of the Disablement Income
Group summed it up when he said that although
there has often been hostile and open
discrimination it has been the frequent
repetition of petty acts of discrimination that
hide behind excuses of safety, welfare, the
common good, or whatever that equally restrict
choice and opportunity. |
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