Selected writings by Mary Arnold. Part II


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"


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.


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.


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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 Mary Arnold's original page describing her adventures with an unusual electric wheelchair.
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Copyright 1997
This Page was created Tuesday, October 28, 1997
Revised Wednesday, December 3, 1997
Most recent revision, Sunday, October 25, 1998