A Brief History of Disability by Mr. Jim Casey

A view from the margins: by Jim Casey

The historical treatment of disabled persons throughout the ages is essentially one of cruelty and total misunderstanding, but it should be examined in a way that the development of our own disability movement in Ireland can best be appreciated.

During the days of the nomadic tribes persons with physical disabilities were very likely ‘put down’ as impediments; this was because they were unable to contribute to the survival or wealth of their tribe and so were usually left to die - assuming they survived infancy - whenever their kindred broke camp. (Darwin’s survival of the fittest.)

Then, during the Middle Ages, their lot had improved either by being provided with a crutch and beggars bowl, or simply being confined to hospitals or leper colonies. These historical points should be considered whilst reviewing the dawn of a new age for persons with disabilities in this island.

The ancient Greeks had developed quaint rationales for disabilities. For instance, epilepsy was a disturbance of the mind, or deaf people were unable to learn because communication was essential to knowledge.

Early Christians did, however, introduce a period of sympathy and pity for the physically deprived, usually based upon charity or the generosity of persons in high places. This did not mean they ceased to regard themselves as superior beings, but it did at least indicate they rightfully considered them to occupy a place in society and were held as equal in the eyes of Almighty God, hence the miracle of the resurrection of Lazarus at Bethany (Jn.11).

However, regrettably they were regarded as impure by the great majority of otherwise worthy citizens-hence the lepers’ peepholes outside many mediæval churches and cathedrals, e.g. Limerick. In this context a very special mention must be made of the Hospitaller Order of St Lazarus of Jerusalem without whose self-sacrifice since their foundation by St Basil in the fourth century there would have been untold misery in Ireland and many other parts of Europe. Lord Dunsany is the present Chancellor of the Order in Ireland.

In spite of the above there was considerable mysticism during the progression of the Dark and Middle ages, and there were many misinformed Christians who associated disability, particularly mental disability, with witchcraft, superstition and even congenital disorders, a sentiment which persists to the present day. Disabled people were often the subject of ridicule-a typical example being the hunchbacked court jester. In extreme instances they even became regarded as manifestations of evil and were subjected to such instruments as the dunking-chair or even being burnt at the stake.

Following the fall of Constantinople to the Turks in 1453 all seats of art, scholarly knowledge and science were scattered throughout Europe and the rest of the civilised world, thus making general education more freely available and less confined to one single centre of learning. Generally regarded as the start of the ‘Renaissance’, this signalled the first faltering steps at attempting medical care and treatment for people with disabilities. Furthermore, for the first time it provided them with access to education with encouragement towards participation in the activities of their respective communities.

In spite of the above, society saw fit in the majority of instances to institutionalise and segregate the ‘abnormal’ where they would not ‘conveniently’ fit into ‘normal’ establishments. There were indicators that society believed disabled people when educated should usually be placed in specially segregated programmes or schools, often far from urban or heavily populated areas. Tragically, this institutionalisation was often to remain with people for their entire lives, and this particularly applies to mental disability where the atmosphere of ‘hospitals’ - hitherto known as asylums - was far from conducive to partial or complete recovery.

In terms of years it may seem insignificant, but this institutionalisation led to the ultimate abuse during the 1930’s and 40’s in Nazi Germany. Disabled persons, most notably those who were retarded or mentally sick became the first guinea pigs in outrageous medical experimentation and ultimately in mass extermination.

Although Jews, homosexuals, and gypsies were the prime targets, all others such as persons with mental or physical disabilities, who did not conform to Hitler and Himmler’s stated creed of an Arian master-race, were systematically put to death at extermination camps. Prior to the release of death they suffered dreadfully. The foregoing deals only, of course with a very short significant period, and it must be emphasised that disabled persons seek nothing but respect, and they will wage their own wars.

The notion of rehabilitation was prompted by the conclusion of the Great War (1914-19), when severely wounded veterans returned from this dreadful conflict. The need for peacetime training, with physical and mental restoration, created the need for the first seriously considered rehabilitation programmes - mainly it has to be admitted for commissioned officers - and many an amputee, blind or shell-shocked ex-soldier eventually found himself selling boxes of matches in the streets of the West End, campaign medal pinned to their lapels.

Because Ireland was only peripherally involved in the Kaiser’s War we did not have as acute a background requiring rehabilitation or re-training of our disabled veterans, although to this day it is eternally creditable that Leopardstown Hospital primarily still caters for Irish survivors of both world wars.

Something remarkable then happened: cures for both poliomyelitis and tuberculosis were found and the rehabilitation era had arrived.

Rehabilitation is all about making a person well in mind and body enabling him to contribute to the society he had left before being struck down. Rehabilitation is also about a return to mental and physical health, and most importantly providing education. Rehabilitation aims to equip people to occupy their rightful places in society, although in Ireland is to be regretted that we are backward in this respect.

During the 1940’s the blind community argued for separate services based upon the belief that people who were visually impaired did not need rehabilitation but education. Advocates who were blind argued that rehabilitation is based upon a medical model whereby the person who is blind needs to be treated and cured rather than educated to live with their blindness. The debate over this approach resulted with a split within the vocational rehabilitation programme, allowing these agencies and those agencies serving the blind to become separate entities.

Not until the movements for social change during the Sixties were other services for people with disabilities seriously considered. For the very first time in a history of mankind consumers, advocates and service professionals began an intensive examination of the human service delivery system to decide what was missing. Community-based programmes for people with disabilities began growing up in the United States in an attempt to fill the gaps left by the missing services. New concepts, new technology and new attitudes were beginning to make a real difference to the lives of people with disabilities.

It is universally accepted that the movements for social changes of the Sixties and Seventies contributed to the huge social changes that swept through the Western World. There were five pillars of change:

The Civil Rights Movement
Consumerism
De-Medicalisation
De-institutionalisation

Starting with the Centre for Independent Living (CIL) in Berkeley, California, in the late 1960’s, disability rights and independent living concepts merged into one operational organisation. Essentially, individuals with disabilities joined together to protest their exclusion from the mainstream of society and to demand more humane, non-medical attention from the service delivery system. Many of those responsible for this innovatory movement were severely disabled troops returning from war in the Far East.

By the early Seventies there were similar CIL's spreading throughout North America. These new organisations were run by the people with disabilities for people with disabilities and were trying to respond to rising demands from the disabled community for control over their own lives. Now, many of these demands sound very much like a civil rights movement, which of course they were and still are. People with disabilities pointed out that just like other minorities they were being denied access to basic services and opportunities such as employment, housing, transport, education and the like.

Self-help groups were of course nothing new in the United States but organised self-help programmes were relatively new. The origin of the nonprofessional self-help group that we all know about is Alcoholics Anonymous. Having a significant disability may not be exactly the same as having a problem with alcohol but a strong parallel remains. The purists of the disability rights and independent living movement believe that only persons with a disability best know how to serve others who have the same or similar disabilities-they may be right, but it is possibly best not to take an autocratic stance. The concept of peer counseling and self-help groups are the most common method for addressing this parallel.

Consumerism contributed another element to the growing Disability Rights and Independent Living movement. For the first time people with disabilities were stressing their role as consumers first and patients last. In other words, individuals with disabilities wanted the right to educate themselves and decide for themselves what services and products they wished to purchase. As clients or patients, people with disabilities were rarely given autonomy or power over the services and products they would use.

De-medicalisation and de-institutionalisation share certain common characteristics. De-medicalisation for people with disabilities means removing the involvement of the medical professionals from the daily lives of individuals with disabilities. People with disabilities are not permanently sick; they are disabled and not dependent upon medical professionals for everyday needs.

By far the most significant example of a de-medicalised service for persons with a severe mobility disability is that of personal assistance. Personal assistance is a consumer directed service whereby the person with a disability recruits, hires, trains and manages his or her own personal assistants at an attractive salary for a person with a vocation for this way of life. When consumers with disabilities are allowed to buy the services they need for daily survival, they have de-medicalised the service.

Unfortunately the vast majority of services provided to people with disabilities are still rooted in a medical model regardless of the individual’s needs and desires. Worse, they often wish to pass responsibilities for which they have been trained to the new recruit in spite of any medical risk involved.

There are very close parallels between de-institutionalisation, which began in response to large mental health facilities for those who are mentally ill- retarded, and principles of de-medicalisation. Medical personnel staff most institutions, even if residents are not ill. Since any such individuals are only disabled by some permanent type of condition, placement in institutions is inappropriate and far more costly than providing those same residents with the support services they need to live in their communities. The disability rights movement is working towards the development of those other non-medical and community based services, which would assist institutionalised persons to move back to their hometowns or areas.

People with disabilities in Ireland form the most marginalised and disadvantaged members of our society because they are faced with inflexible bureaucracies that cater solely for the ‘normal’ majorities. Disabled persons may as well be invisible as they are faced with inaccessible facilities that deny access to a vast range of goods and services that others take for granted. Most of all the they are faced with attitudinal discrimination that is caused by disinterest, fear and ignorance of disability issues.

Looking back say, fifty years ago, the chances are that a person with a disability would seldom if ever have been seen in public. That is because they were accommodated in jails, homes, institutions and, in many cases hospitals; to the average person they may as well not have existed and for the better-off they were confined to the house and, when patience was exhausted, sent to ‘bins’ or places where they could play ludo with fellow inmates. Disability had no profile whatsoever in the community; it was, and - in many cases - still is, politely ignored by the popular attitude of society.

Civil rights movements are social groups whose members have experienced oppression, exclusion, and other forms of discrimination over a long period of time. Like other civil rights movements the disability movement was born when people became aware of the infringements of their human and civil rights, and thus they organised and spoke up for themselves at local, national and international levels. They were not looking for pity or sympathy, simply demanding their statutory rights as members of the human race.

Like other civil rights movements the disability community has learnt to work with governments which are ultimately responsible for human rights violations. In this political context we have arrived at the United Nations standard rules (1992) on the equalization of opportunities for people with a disability, and to conclude I should like to quote the introduction to these rules:

" In all societies of the world there are obstacles preventing persons with a disability from exercising their rights and freedoms making it difficult for them to participate fully in the activities of the societies."

These very important rules are of great significance for people with disabilities but it a topic for another time and another place.

Until we meet again,

slan.

Seamus 0 Cathasaigh

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A Brief History of Disability by Mr. Jim Casey