In the nineteenth century, Karl Marx wrote:
“Men make their own history, but they do not make it just as they please; they do not make it under circumstances chosen by themselves, but under circumstances directly encountered, given and transmitted by the past. The traditions of all the dead generations weigh like a nightmare on the brain of the living”. (Marx 1979, p.103).
This aptly describes the experience of exclusion and discrimination for people with disabilities. How society views disability today, is a direct result of how it has constructed a theory of disability over past generations as a consequence of social, political and economic circumstances. In many ways the social model of disability came into existence as a result of opposition to the medical model, which viewed individuals scientifically, in isolation from the rest of society. It can therefore be argued that the medical model led in essence to notions of charity as opposed to rights. However, I would also argue that the social model does not go far enough in challenging the oppression of disabled people. As well as providing the historical circumstances in which the social model of disability emerged, this chapter will also focus on the principal that only by establishing legal and economic rights as opposed to depending on charity can disabled people in our society experience real social change in the quality of their lives. To this end rights for people with disabilities in relation to employment, education and health will be discussed in some detail together with how issues of class, gender and ethnic origin also impact on people with disabilities.
Finkelstein (2001, p.7) has argued that the ultimate effect of a persistence of the medical model has been to render people with disabilities “socially dead”, unable to fully interact and develop relationships with the rest of their community. The individuals concerned became increasingly isolated and alienated from the rest of society. Historically, it was the industrial revolution and the development of a capitalist class based society in Britain, which marked the first attempts by government to pass legislation in regard to disability, beginning with the Poor Law Act 1838. Though people with disabilities were looked upon as the ‘deserving poor’, they were also viewed as being separate and not equal to the able-bodied society in general. Indeed Oliver (1990, p.xiv) has argued that, it is the underlying logic to the growth of capitalism, which establishes disability as an individual and medical issue. ‘Social Darwinism’, the application of Darwin’s theory of ‘the survival of the fittest’ in the natural world, to human society, divided people between the fit and unfit and was Nazi Germany’s justification for the mass extermination of the mentally and physically disabled.
It was only in the 1960s that a serious attempt was made to obtain rights and equal status for the disabled. The disability movement has its origins in the mass protest movements in the US in the 1960s. (Quinn and Redmond 2003, p.144). African Americans, women and later gay people began demanding equal rights, fusing with the growing antiwar movement which was organised, to a large extent, by returning Vietnam veterans, many of whom had been physically and mentally damaged while serving in the armed forces. It was as a direct consequence of the inspiration provided by this wave of protest that people with disabilities began to organise in the US and beyond. In Britain, although the Disability In common Group was the first attempt to organise disabled people there, it was only in 1976 with the founding of the Union of Physically Impaired Against Segregation (UPIAS) that the disability movement really began to take off. UPIAS argued for the empowerment of the disabled, the recognition of them as equal citizens with human rights and that fundamentally “Disability is a situation caused by social conditions”. (UPIAS, 1976 cited in Finkelstein 2001, p.6).
This demand for rights stands in stark contrast to the charity model. The Concise Oxford Dictionary (1999, p.238) defines charity as “…giving to those in need”. Increasingly, what people with disabilities demand, is the empowerment to determine their own needs, as opposed to being passive recipients of charity and to have these needs met by the state and not by charitable organisations, however well meaning. One activist, Jenny Morris, was already part of the British feminist movement when she became disabled due to an accident and as a result became involved in the disability movement. She applied the feminist principles she had learnt, especially the notion that the ‘personal is political’, to the campaign for disability rights. (Quinn and Redmond 2003, p.146). From her own personal experience as an activist in the disability movement, Morris clearly illustrates the argument for rights as opposed to charity. She was a member of the organisation, the Campaign to Stop Patronage and took part in its protest outside the BBC in London which was broadcasting its ‘Children in Need’ event:
“Two men came up to us thinking we were part of the ‘Children in Need ‘ event. One of them offered me a £5 note, which I refused, giving him a leaflet and explaining that we wanted rights not charity. He stopped short, realised with a shock what I was saying and then said he agreed with me and he had never thought about it quite like that before”. (Morris, 1996 pp. 190-2).
Continuing pressure from the disability movement here in Ireland, for the establishment of legal rights as opposed to charity, has finally seen the passing into law of the Disability Act 2005. It defines disability, establishes rights, draws up sectorial plans for each government department and details how they are to be financed with a definite timetable. While welcoming the plans, the National Disability Authority stresses the need to broaden their scope and provide more detail. (NDA 2005, p.13). Another significant development was the passing of the Mental Health Act 2001, which finally came into operation, with the agreement of all concerned parties, in November 2006. This Act stresses that the best interests of the patient will be the principle concern while due consideration will be given to other people who may be in danger if decisions are not taken. Amongst other things, it establishes Mental Health Tribunals, appointed by a commission, to review decisions made by professionals. Those presenting their cases to the Tribunals are the psychiatrist and the patient, the latter being accompanied, if they wish, by an advocate who can represent them. Internationally, in response to growing pressure from the world disability movement, the UN has been forced to attempt to establish, for the first time, a treaty on human rights for the disabled. (www.un.org/soc, 2006). These laws and treaties are important because they establish legally binding rights for people with disabilities and are a further step towards their acceptance as equal citizens.
However, political pressure needs to be continually applied to ensure the full implementation of this legislation and also the able bodied in society need to be made more aware of the prejudice the disabled community have to combat in their daily lives. In an email to the author (Jun. 2011) Kiran Emrich has argued how Guide dogs for the blind provides a good example of this lack of awareness. It needs to be understood that they must be allowed to go anywhere their owner go because they are working dogs not pets and thus must not be petted while working. This is also connected to the issue of charity. The Irish Guide Dogs Association receives a huge amount of charitable donations and is awash with funds. But they only work with a tiny fraction of people with a visual impairment. Yet the National Council for the Blind Ireland, which works with most people with a visual impairment receives very little donations and is massively under funded. Guide dogs are an obvious marker of disability and so an obvious target for charitable donations. This shows how charity can be misdirected because of a lack of a lack of publicly well resourced disability education programmes.
The Crisis in the Mental Health Service
An area of particular concern in relation to human rights is mental health. People who have these conditions are often the most vulnerable in society. They are unique in two ways. First, they have mental and emotional problems rather than physical conditions. Secondly, to a degree and manner unlike any other health issue when their condition reaches crisis point it can result in death by suicide, in other words by their own hand. Suicide rates in Ireland, particularly amongst young men have reached alarming proportions (Expert Group on Mental Health Policy 2006, p.159), significantly higher than road deaths yet they receive much less attention by the media and those in authority. This situation has become even worse with the recession, while at the same time mental health services are being continually starved of vital resources. In 2009, the reported number of suicides in the state was 527, a dramatic increase of almost 25 per cent since the previous year. In addition, over 11,000 people were admitted to hospital as a result of harming themselves. (Irish Times 2010). Since then the rate of occurrence of these incidents has remained almost the same. There has been disproportionate number of incidents of suicide and self harm amongst the Gay and migrant communities. This is why it is so important to have a mental health service that can match best practice internationally. In 2001, the UN adopted its Principles for the Protection of Persons with Mental Illness (MI Principles). The first of these principals’ states:
“All persons have the right to best available health care, which shall be part of the health and social care system”. (www.unmentalhealth.ie, 2007).
In an email to the author (Nov. 2010) Peader O’Grady, however, comments that it needs to be stressed “…the ‘best available’ standard of the UN exposes the circular logic of ‘best practice within available resources’. A thimble of water to a thirsty child is best practice if you can argue there is only a thimble ‘available’. In a rich country division of resources between rich and poor is the core of politics in the liberal/social democratic range”.
Amnesty International (AI) has commented that we can not have proper human rights protection in mental health unless we adequately fund the mental health service. Commenting on this situation and as part of its campaign Mental Illness the Neglected Quarter, Fiona Crowley of AI, Ireland has made the following observation:
“One in four people are affected by mental health problems and, as we speak, people lack adequate supports and services. This means almost every family in Ireland is affected by successive governments’ apathy in this area”. (Crowley, 2007 cited in www.amnesty.ie).
In January 2006 the Government accepted the recommendations contained in an independent report that it had commissioned, Vision for Change (VFC), as the basis for its future mental health policy. Since the report’s publication almost nothing has been done to realise its full implementation. There are two key related factors here. First in relation to the HSE annual budgets, the current one being the HSE Service Plan 2012. In two years up to the end of 2011 the HSE reduced its health expenditure by E1.75bn. and by a further E750bn. for 3012 which will leave the total health budget standing at just over E12bl. (www.inmo.ie 2012). If one had any doubts of the neo-liberal philosophy of the HSE there is no need to look any further than the title of a chapter in the HSE Service Plan 2012: Corporate Planning and Corporate Performance! Mary Harney’s political philosophy was shown by her comment on the health budget for 2011 that
“…all the agenda items that have been pursued in recent years will be pursued even more aggressively over the next phase”. (Donnellon, 2010).
This is code for an even more determined effort to continue her policy of neo-liberal economics and further privatisation in the health service. For mental health the situation is even worse. By EU 15 standards Ireland should spend at least 12 per cent of its overall health budget on mental health. In the mid 1980s the Irish State was spending just over this amount on mental health. For 2012 this has been reduced drastically to 4.8 per cent of total health spend. (Hugh 2012). To a large extent this has been achieved by the second related factor that of the continuing HSE staffing embargo. The result of this embargo is that staffing numbers in mental health have dropped from 10,476 to 9,772 in the fourteen months up to February 2010. (www.imhc.ie 2010). In the first two months of this year 425 psychiatric nurses retired from the HSE and were not replaced. (www.irishexaminer.com 2012). On the current staffing embargo, Caroline McGrath, Director of the Irish Mental Health Coalition, commented: “This moratorium is a crude and brutal instrument that is crippling . . . A Vision for Change . . . The Government’s plan for moving from acute hospital care to a community based service was based on redeploying existing staff and expanding the total number of staff. Instead we have a service that is . . . haemorrhaging staff, reducing A Vision for Change to a mere pipe dream. . . Clearly, too, the fact that mental health problems cost the exchequer E3bn per year has not been appreciated”. (www.imhc.ie 2010).
The previous minister responsible for mental health and disability, John Maloney, hoped to raise capital (not human resources) funding from the sale of long stay psychiatric institutions which should have been done years ago, but there is no guarantee that their estimated price will be realised or how long it will take to sell them.
Child psychiatrist Peader O’Grady (2005) argues that instead of the present chaotic health service, we should introduce a well organised service, universal and free at the point of delivery. Private health care should be banned as it is, for example, in some states in Canada:
“The health service must be provided for all equally on the basis of need. No discrimination should be allowed on grounds of age, disability, gender ethnicity, religion, sexual orientation or social class. Jumping the queue by buying private care should be banned. Not alone is this unfair, it is also an inefficient use of resources, as those with the most money are not usually the neediest”. (O’Grady, 2005 p.33).
To create a properly functioning and just publicly owned health service in Ireland would mean a reversal of the present government’s failed neo-liberal policies by calling a halt to putting the interests of banks and developers before people.
Meanwhile as already stated, Ireland has an appalling level of suicide and also the human rights of mental health patients remain a serious concern. Children are still admitted into adult psychiatric wards with all the dangers that that implies. Electroshock therapy or ECT, banned in many countries, is still being administered in Ireland, some times when the patient is not in a fit mental state to make a responsible decision to give their willing consent to the treatment. Not alone is this treatment not banned but its side effects including memory loss are rarely mentioned and alternative treatments are seldom suggested. (O’Grady, 2010) further argued that the same can be said for the use of over sedation and physical restraining of mental health patients. Also there is no adequate monitoring of involuntary detention, which should ideally be part of a totally restructured and democratically controlled health service as a whole. (O’Grady, 2010).
The consequences of the Government’s short-sightedness is that mental health staff feel frustrated and that their dedication is being abused. Increasingly mental health patients are being issued with medication, to the delight of pharmaceutical corporations, because the government refuses to adequately fund an alternative social model or recovery model of mental health, which would provide alternatives to pills. As suggested in VFC, this model would include increasing staff numbers especially in the areas of psychology, counselling and occupational therapy. Greater funding would be provided for far increased mental health service user input and for initiatives such as for autonomous service user led drop in centres. According to The Irish Times recent editorial on the government’s implementation of Vision for Change:
“It is extraordinarily cynical of the Government to claim on the one hand to be tackling the negative stigma surrounding mental health, while on the other starving the sector of vital funding”. (Irish Times, 12 Oct. 2010).
Under pressure, the new Fine Gael-Labour Government with Kathleen Lynch as Minister for Disability and Mental Health, did allocate E35ml. per annum for community mental health services in Budget 2012 and that this amount would be ring-fenced for future annual investment in the service. However, Orla Barry of Mental Health Reform, has argued that none of this is new money. It represents a transfer of funds from hospital based services to community based services and in fact the mental health budget will suffer a cut of one per cent for 2012. As none of this E35ml. has yet been spent and as none of the promised 370 additional posts has been filled, Barry argues that we could actually be looking at an effective cut of almost six per cent in mental health funding by the end of 2012. (Barry, www.mentalhealthreform.ie, 2012).
Taking a more general view of people with disabilities in terms of employment and education, the statistics reveal a stark picture. The latest figures available are from Census 2006. They show that the Republic of Ireland had a total population of 4,239,848 of whom 393,785 were people with disabilities or 9.3 per cent of the total population. (CSO 2007, p. 13). The region with its lowest proportion of the population with disabilities is the Mid East (excluding Dublin) standing at 8.1 per cent and the regions with the highest were the Border and the South East each with 9.6 per cent. Nationally Limerick City with a population of 52,539 has the highest proportion of people with disabilities, 6,921 representing 13.2 per cent of the population almost four percentage points above the national figure. This no doubt reflects, at least in part, the fact that this city has one of the highest levels of poverty in the state. Fingal with a population of 239,932 has the lowest proportion of people with disabilities 17,215 representing 7.2 per cent of the population (CSO 2007, p.16).
If we focus on employment, according to Census 2006, people with disabilities made up 4.3 per cent of the workforce, which currently stands at approximately 2.2 million. (www.cso.ie/statistics, 2012). Considering that those with disabilities make up 9.3 per cent of the total population and that 360,529 of them are aged fifteen or over, it is extremely disturbing to learn that only 26 per cent of this number, or 93,841, are in paid employment. (CSO 2007, p.66). This figure contrasts sharply with the overall unemployment rate (including all able bodied persons and people with disabilities) for August 2012, which stood at 14.7 per cent of the workforce. (www.cso.ie/statistics 2012). Whatever slim chance there is of able bodied people getting work, the disabled have even less chance and for them even emigration is rarely an option.
The Rehab organisation states:
“Our philosophy is based on the belief that regardless of a person’s disability or social circumstances, its ability that should determine success in life”.
(www.rehab.ie, 2007). This central principle of Rehab has evolved after decades of discussion within the international disability movement. In the economic sphere, one area where people with disabilities face most difficulty in achieving equality is in access to employment. However, Rehab does not say what work, if any should be provided for severely disabled people. In addition, according to O’Grady (2010) “…the careless casting aside of people with disabilities reflects an attitude of ‘slim pickings’ or even negative returns with regard to the potential of their exploitation for profit. It is not considered profitable to meet the needs of disabled people in general in order to exploit their ability. The extreme extrapolation of this view is the fascist solution of extermination”.
The International Labour Organisation (ILO) estimates that world wide there are 470 million disabled men and women of working age. In December 2006 the ILO’s convention on people with disabilities and work was adopted unanimously by the UN and amongst other things, “…calls on all states to open up opportunities in mainstreaming work places to job seekers with disabilities in contrast to past practices, in which large numbers worked in sheltered workshops in conditions not covered by employment or minimum wage laws”. (www.ilo.org, 2007).
The key phrase here, one that has come into common usage internationally in regard to the disabled is “mainstreaming work places”. This is the idea that where ever possible, people with disabilities should be given the proper support and where necessary training, to have an equal opportunity of availing of all employment opportunities with the able-bodied and be eligible for the same pay and conditions. EU policy has also began to promote the inclusion of people with disabilities “..in the planning, monitoring and evaluation of changes in policies, practices and programmes”. (www.ec.eu/employment_social, 2007). However, as AI argues, Ireland should immediately ratify and implement the European Convention on Human Rights, on the general prohibition on discrimination and the Convention on the Rights of Persons with Disabilities in full. (Amnesty International Ireland 2010, pp. 50-51). In Ireland in recent years two significant pieces of legislation have become law which impact on employment and disability. The first was the Employment Equality Act 1998. This act has been more generally reinforced by the Equal Status Act 2000.
However, despite all this legislation, as already stated, only 26 per cent of the disabled in Ireland are employed, little more than a third of the figure for the rest of the population of working age which stands at almost 70 per cent. In the now obsolete National Development Plan 2007 to 2013, the government only intended to increase the proportion of people with disabilities in employment to 45 per cent. (Irish Times 2007). To say this target figure was a disappointment is something of an understatement when one considers that at the time Ireland was still one of the wealthiest countries in the world. To enable the greatest number of people with disabilities to access employment will also mean substantial investment in meeting the needs of disabled people including providing the likes of assistive technology, assistant/carer and accessible work places. For capitalism, having a reserve army of labour in the form of unemployed disabled people, helps ensure a low waged and demoralised work force. (O’Grady, 2010).
As far back as 1977 a 3 per cent employment target was brought in for the civil and public service, yet this hardly ambitious figure has still to be realised. Morris 2004, p.73). argues that the reason for the failure to reach such quotas is because “…most employers ignore schemes and most politicians are unwilling to impose sanctions and enforce the law”. The other significant problem is that many people are reluctant to disclose their disability when applying for work as they fear discrimination. In a survey into public attitudes to disability, published by the National Development Authority in 2002, it was found that while 81 per cent of the public said that people with a physical disability should have the same employment opportunities as the able-bodied, only 55 per cent felt this way of people with mental health problems. (NDA 2002, p.44). Most employers reflect this view.
Elaine Shields, in an interview with the author (Jan. 2007), claimed that what is needed, is the introduction of a strict legally binding employment quota system, which is properly resourced and enforced, with the use of heavy penalties for non-compliance. Instead of this, employers are only required to provide ‘reasonable accommodation’ for workers with disabilities. Despite its past history of sterilising women with a disability, Elane Shields believes that the Swedish model is one that Ireland should aspire to. In Sweden a disability ombudsman has been appointed, the first country in the world to have one, who can demand that employers give precise reasons for not achieving the required quota for employing people with disabilities. Even in the US, where neo-liberal economics was born, public training and employment policy have been streamlined into being administered by the same body and is why US companies “…have the best record of employing people with disabilities in Ireland“. (www.nda.ie, 2007, Emrich, 2011). Another example is Denmark, where the equivalent of FAS employs disability consultants, many with disabilities themselves, who support people to access the labour market. (www.nda.ie, 2007).
Though the Irish Business and Economic Confederation and the Irish Congress of Trade Unions have jointly initiated their Workway programme, aimed at improving employment opportunities for people with disabilities, it is essentially a voluntary code of practice, amounting to no more than a set of guidelines. The programme was part of the Social Partnership process and this explains why it is so weak, why none of its provisions were made law and also the meagre resources invested in it. Social Partnership locked workers into an agreement with employers in an attempt to prevent them from taking independent rank and file action to fight for better pay and conditions. In the mid 2,000s the Amalgamated Transport and General Workers Union carried out an audit to uncover the levels of disability discrimination in the work places it was organised in. It found that in Ireland, many of the employers surveyed, still did not comply with Part M of the building regulations and therefore working environments were unsafe for the physically disabled and that 40 per cent of them did not have a commitment to equal opportunities for the disabled people in general. (www.tgwu.org.uk, 2007). Again this points up the lack of government workplace inspectors. This situation still remains largely the same.
An example of a more proactive approach to advancing beyond the traditional scope of the social model of disability is again provided in Sweden. The state owned company, Samhall, is one of Sweden’s largest subcontractors in the electronics, furniture packaging and mechanical engineering sectors, and it is also a big provider of services, such as cleaning and property services. “The goal of Samhall is to create meaningful work for persons with reduced working capacity”. Employing about 21,000 people with different kinds of disabilities the company is an essential part of the Swedish Government’s labour market policy to create job opportunities for disabled persons. Samhall trade unions within the Swedish Trade Union Confederation (Landsorganisationen) concluded a collective agreement especially for the workers within Samhall’s industrial sector. Since 2006, both industry-workers and workers in the service sector are covered by the same collective agreement. Uniquely more than 95 per cent of Samhall employees are trade union members. This gives Samhall workers the same rights as any other worker to get support from their trade union when needed. (www.ilo.org Trade Unions and Decent work for People with Disabilities. P.17 visited 31 Oct 2010).
I would contend that it is precisely the failure to adopt the Swedish approach to disability that has resulted in significant disadvantage being experienced by the disability community in Ireland. In Sweden, the state has gone beyond the traditional boundaries of the social model of disability, civil and human rights, to encompass economic rights also. Most NGO’s in Ireland still hold with the traditional social model and ignore the fact that disabled people also have economic rights that need to be met.
In contrast to the situation in Sweden, in Ireland rehabilitative training and sheltered work are grossly under funded, with long waiting lists and frequently the needs of the disabled are not fully addressed due to ever-larger staff workloads. Community Employment schemes are also supposed to provide a “stepping stone to open employment”, yet less than 10 per cent of participants with disabilities achieve this goal, once their schemes end (www.nda.ie, 2007). The poverty trap is another major problem confronting people with disabilities attempting to enter the workforce. The poverty trap is another major problem confronting people with disabilities attempting to enter the workforce. Though Disability Allowance entitles workers to earn up to E120 before they lose any benefit, it also means that most of these workers are reluctant to take up full time work on the minimum wage as it would wipe out all their benefits and eventually their right to a Medical Card. (SW 29, 2012 p.18). If they were not forced into low paid work due poverty and if wages were higher this would not be an issue. This dilemma explains the disproportionate number of disabled people in part time work as opposed to those in full time work.
High levels of unemployment amongst people with disabilities in Ireland relative to the able-bodied workforce will only come to an end when firm action is taken by the government that means investment as well as legislation. Many of those advocating the social model of disability fail to stress that employment rights are an empty gesture if training and work are not created. Only the state can provide the necessary finance to undertake this task. The question that could be asked is weather the government thinks disabled people are worth employing in the first place. Karl Marx’s argument, “from each according to their ability to each according to their needs” (K. Marx 1935, p.24) seems apposite here.
Also, it needs to be stressed that greater access to education will lead to greater employment opportunities. In Ireland the legal framework, which existed under British rule, continued after Home Rule, was established in 1921. The Constitution of 1937 was the first significant attempt by the new state to reinforce its sovereignty. Part of the ethos reflected in this Constitution was the traditional model of the family, two parents and children living together as one unit, with the father being regarded as the head of the family taking the role as the ‘male bread winner’, while the mother was the ‘home maker’. Having established this principle in law, it therefore follows that the family bears the ultimate responsibility to educate children as the Constitution itself states:
“The State acknowledges the primary and natural educator of the child is the Family and guarantees to respect the inalienable right and duty of parents to provide, according to their means, for their religious and moral, intellectual, physical and social education of their children”. (Carey 2005, p.207).
While this education can take place in the home or in private or state schools (Carey, ibid, p.212), it should be noted that any special needs the child may have, particularly in regard to disability are ignored. Also the heavy emphasis of the family as the primary educator of the child is as a direct result of the influence the Catholic Church has had on Irish education. Until the early 1970s, the Catholic Church was granted a ‘special position’ in Irish society enshrined in the state’s constitution. (Allen 1997, p.46). To this day the Church still has considerable influence on education, for example being on the board of governors for individual state schools and also on the interview panels which decide on the appointment of teachers. The historic influence of the Catholic Church on education has had negative consequences for the teaching of children with special needs. In the past, though these children were viewed as ‘abnormal’, they were put into mainstream schools where no attempt was made to meet their particular needs. From the end of World War Two to the 1980s a change in policy occurred, which meant that increasingly, children with special needs were taken out of mainstream education and placed in special schools. This approach is based on the medical model of disability, which by and large “…is dealt with by means of segregation in the context of segregation of the services or the actual institutionalization”. (Doolan 2003, p.73).
The situation began to change in the 1990s with the case of Cathy Sinnott’s son, Jamie; Justice Barr argued that the appeal by the state was simply a mechanism for delaying legislation. He found in favour of the plaintiff declaring that there was no constitutional age limit on the obligation of the state to provide free primary education to the grievously disabled, the only criteria was need. It was only by the sheer determination individuals such as Sinnott which in turn provided a focus for increased pressure from the disability movement in Ireland that resulted in the Educational Welfare Act 2000 and the Education of Persons with Special Educational Needs Act 2004. (EPSEN). This latter Act while at least showing a willingness by the government to engage with the issue of state provision for special needs education, has however, been criticised for being too limited and lacking in vision. It has been argued that the EPSEN is too individually based and not child centred enough, puts too much responsibility on the school principle and hinders parents from taking court cases. (Carey, op cit, p.163). It should also be emphasised that all schools should be mainstreamed with able bodied and disabled being taught together. By putting all children together, you help awareness and understanding of disability and will create future generations of people with greater understanding. Schools should be banned from selectively choose who attends. This has led to a situation where some schools (particularly educate together schools) have a far higher proportion of disabled children than others. (Emrich, 2011).
The level of inequality in education can be shown by the figures from Census 2006, again the latest figures available. This tells us that there were 3,375,399 people who are over the age of fifteen, the official age for which it is legal to leave school. Of this figure 2,850,333 have left full time education. There were 829,102 people with a third level qualification or 29.1 per cent. There were 360,529 people with disabilities over the age of fifteen of which 329,255 had ceased full time education. CSO 2007, p.82). However, a much lower proportion of this group when compared with the population as a whole had obtained a third level qualification, 50,624 or 15.38 per cent, almost half the figure for the population as a whole. (CSO 2007, p.83).
Though it has at last been established that “…Education is the teaching and training of a child to make the best use of his inherent potential capacities, physical, mental and moral” (Duane 2004, p.8), the tragedy now is that with the dramatic reduction of special needs assistants, especially now that the IMF and the ECB are dictating Irish economic policy, this prospect is becoming even more of an aspiration.
Equality for People with Disabilities in Relation to Gender and Ethnicity
Although disability is often ignored in serious political discourse, the relationship between gender, ethnicity and disability receives even less attention. In terms of gender, in the 1840s, in the US, women and to a lesser degree men often suffered severe oppression at the hands of the medical profession, as Barbara Ehrenreich has commented:
“The prevailing ‘scientific’ view was that invalidism was perhaps natural and perhaps inevitable in women, that the mere fact of being female was a kind of disease, requiring as much medical attention as the poor invalid‘s family could afford. Why men would also suffer was not clear, but they, too, were treated with bleedings, purges and long periods of enforced rests”. (Ethrenreich 2009, p.85).
It was practices such as this, viewing women in general and all people with illness or disability as individuals, as separate from the community and not belonging to it that was a large part of what led to the medical model. It also accepted notions of charities carrying out many caring tasks on behalf of the state.
Dealing specifically with gender, Connell provides a useful definition of it:
“Gender is the structure of social relations that centres on the reproductive arena, and the sets of practices (governed by this structure) that bring reproductive distinctions between bodies into social processes”. (Connell 2002, p.97).
It should, however, be stressed that gender is a social construct as distinct from sex, which defines differing physical characteristics between men and women. Men and women are socialised into gender roles, masculine and feminine by their different experiences as a result of conditioning of prevailing social, economic, political and cultural forces in the society in which they live. Similarly, disability is also socially constructed and is distinct from impairment, which is used to describe an individual’s functional limitations. Quinn (1999) has agued that the basic problem is not the difference of disability but the way it is constructed.
Historically disability studies have been “gender blind” particularly in relation to men. On the other hand, the study of gender has also largely ignored disability. While women in society in general are discriminated against, men and women with disabilities face different forms of discrimination in relation to gender and in many cases the type of disability they have. Masculinity can be “extremely oppressive” (Morris, 1998) being about strength and the family breadwinner and is the opposite of being vulnerable and dependent. When, due to disability, men are no longer able to work or play sports, their self-esteem may suffer and they may feel less than complete men, and that their traditional hegemonic masculine identities have been undermined. Some men’s way of restoring their confidence is by developing financial independence rather than a powerful physique. Others choose, in however limited a way, to partake in sport aspiring to become the ‘supercrip’ as a strategy to cope with the stigma they experience from others. (Meekosha 2004, p.10). This approach was shown graphically at the recent London Paralymics. While the individual athletes are to be commended for their achievements the down side is that “the Irish nation knows nothing about the disabled except in terms of the Paralymics and being ‘heroes’ and ‘superhuman’” as one campaigner recently commented. (Sheridan, 2012)
Another area in which gender has had a significant impact on disability is in the role of caring for relatives with disabilities. McCarran (2006) has commented that “the vast majority of carers for relatives with chronic disabilities are women”. However, the evidence tends to weaken this argument. While it does prove that women do indeed make up the majority of carers, to describe them as “the vast majority” in this role is rather misleading. Census 2006 (pp.119-121) showed that carers represented 4.8 per cent of the population consisting of 3.6 per cent of men and 5.9 per cent of women, which equates to 37.5 per cent of carers being male and 62.5 per cent of them being female. Therefore a significant proportion of men are also carers. By carrying out this role as carers, the state has been facilitated in escaping its responsibilities in relation to disability issues. Morris (1993 p.94) has argued that feminists have dismissed women who act as carers for relatives, as playing a crucial part in women’s dependence and in unpaid work. It is also no coincidence that the almost all carers are working class because the wealthy can afford to pay some one else to perform this task for them. (O’Grady, 2010). While Carer’s Allowance should obviously be increased, a more sustainable approach might be for the health service to pay them directly as staff.
A comment should also be made in regard to genetic screening and abortion. Screening allows women to be informed of whether there are any congenital abnormalities in their pregnancy, while the right to abortion would allow women to terminate a pregnancy in such circumstances. Tom Shakespeare (2006 p.103) argues that only women who have to live with the consequences of the distress of abortion or the potential stress of supporting a child with a disability should have the right to make decisions about screening and termination. However, rather than saying that abortion is distressing, I would agree with (O’Grady, 2010) that it is a less desirable choice than adequate contraception.
In terms of sexuality and disability it has been argued that people with disabilities have no sexual or emotional needs and are in fact ‘sick and sexless’. (Boone 2004, p.73). It can be extremely difficult for many disabled people to achieve a sense of community if they have more than one identities or experience multiple oppression as Boone explains:
“A gay disabled person may face homophobia in the disabled peoples movement but they also find it difficult to gain a sense of belonging in the gay movement due to inaccessible bars and clubs and a preoccupation with aesthetics and the body beautiful”. (Boone 2004, p.74).
Shakespeare (1996 p.107) draws attention to another issue which gay men and lesbians face. They may be denied essential help when a carer discovers their sexuality.
While it is certainly true that women and gay people suffer from discrimination in society and that people with disabilities are also an oppressed group, it does not necessarily follow that all disabled women are more oppressed than all disabled men. Race, class and the type of disability are also factors, which may add to an individual’s oppression.
Maria Pierce argues that there is a tendency to view people with disabilities as one homogenous group. A typical response from a member of an ethnic minority interviewed by her who was asked what their awareness of the existence of organisations of people with disabilities was, “I don’t really know any. I never heard of them. What are they? I wouldn’t mind knowing more about that”. One person expressed a desire to make a contribution as a volunteer: “I would like to be involved, if possible, to help as well, especially for other people from other nationalities. because I feel I would understand how they feel.” (Pierce 2003, pp. 29-30). Many asylum seekers have mental health problems often caused by the circumstances by which they were forced to flee their countries of origin. Their conditions are exacerbated by the fact that they are not allowed to work or take up third level education opportunities and by the direct provision regime, which they are forced to live in. 49 asylum seekers have taken their own lives while living in direct-provision centres in the last decade to the end of 2010. (Cullen, 2011). Also asylum seekers rarely receive counselling by someone from the same ethnic, religious or cultural background as himself or herself. Travellers face discrimination and may need flexible arrangements when for instance organising medical appointments.
These minorities with disabilities often face issues concerning the health service particularly in regard to language and literacy. According to Pierce the health service “assumes literacy among all patients”. A Chinese community worker argued that often the best way of communicating information on health education to members of her own community was orally because “leaflets don’t help. They are a waste of time. Some people don’t even have literacy skills in their own language”. (Pierce 2003, pp.32-34)). Language can be particularly problematic with regard to deaf people. Pierce asserts that “sign languages in different countries differ completely from each other, just as spoken languages differ from one country to another”.
In Ireland governments are not instinctively altruistic. They are interested in self preservation and power and are close to those they think can keep them in power, which in the past was the Catholic Church but more recently, with Ireland becoming an increasingly secular state, has been the nation’s growing wealthy elite. (Allen 1997, p.46). History has shown that it is only when this relationship is challenged that reforms are introduced. If this challenge is strong enough it may result in a totally revolutionary transformation in society through the force of people power leading to direct democracy, in other words, socialism. In the words of James Connolly (1987, p.269), what should be argued for is no less than“…the enthronement of the Irish nation as the supreme owner and ruler of itself, and all things necessary to its people – supreme against the foreigner and the native usurping ownership, and the power dangerous to freedom that goes with ownership.”
The present government claims that it believes in the social model of disability but this is on a par with Margaret Thatcher claiming that the NHS was “safe in our hands” (Massan, 1983) while at the same time also declaring:
“…Who is society? There is no such thing! There are individual men and women and there are families and no government can do anything except through people and people look to themselves first. It is our duty to look after ourselves and then also to help look after our neighbour and life is a reciprocal business and people have got the entitlements too much in mind without the obligations…” (Key, 1987).
This is the individualist position of neo-liberalism that Naomi Klien (2007 pp.49-56) so graphically describes in her book ‘The Shock Doctrine’ and has led to the IMF and ECB determining the economic strategy of the Irish State. She shows how, following social disasters the “shock therapy” philosophy of Milton Friedman and the “Chicago School” has led to the neo-liberal economics of today. (Klein 2007, pp.49-56). A more violent version of this philosophy was carried out in Chile in 1973 by the military under General Pinochet when a democratically elected social democratic government was over thrown in a coup and a vicious right wing dictatorship took power unleashing wholesale privatisation. (Klien, pp.7–10). Although the situation was somewhat different, the contradictions were just as stark when in an attempt to ensure the survival of state capitalism in Poland in 1981, General Jaruzelski, while still publicly proclaimed his belief in the self emancipation of the working class, was at the same time sending his tanks in to smash the free trade union, Solidarnosc. (Klien, pp171-82, Cliff 1988, pp. 167-77).
Although in the world today, there is a growing acceptance of establishing rights for people with disabilities in law, notions of charity in regard to the disabled still exist as is shown by the growth of organisations, including, the Irish Wheelchair Association. While no doubt these groups do good work they are, nevertheless, perpetuating the charity model of disability. Other organisations, for example, People with Disabilities Ireland receive statutory funding operating in the framework of the social model. The problem with most of these latter groups is, that they only go so far with their campaigning for fear of jeopardising their funding and often end up being co-opted by the state.
This lack of radicalism was bucked recently by the campaign of community organisations, including the Kerry Network of People with Disabilities, who are attempting to protect their funding and autonomy against a background of recession and astronomical banking bailouts. Since August 2009, the Kerry Network, along with the support locally of others from the community sector, the Kerry Public Sector Workers Alliance, Free Education for Everyone and People before Profit organised two demonstrations and a public meeting in Tralee to fight the government’s proposed cuts to community development projects. This sort of united front approach where every one effected by austerity joins together and fights back instead being divided between the private sector and the public sector and service users and service providers. In this way the government is hoping to pave the way to renogiate the Croke Park Agreement which in reality is nothing more than an extension of Social Partnership. Rather than renogiation it should be scraped.
This radicalism has continued in recent months with several protests being organised opposition to the cuts in Special Needs Assistants and Home Helps. At the beginning of September 2012, the current government’s Minister for Health James Riley announced that E130 would be cut from the current health budget including E10 from personal assistants (PA’s) and to transfer the additional E35ml promised to community mental health services to offset the deficit in the HSE. (Sheridan, 2012). This was met by two demonstrations in the same week outside government buildings, one by those opposed to cuts to PA’s, many in wheel chairs and the other by those demanding that the Government continue to stand by its commitment to mental health funding. Much like the previous government’s embarrassing u-turn when it threatened to withdraw Medical Cards from the elderly a few years ago, the present government was also shamed into reversing its proposed cuts. This spirit of resistance is mirrored throughout Ireland and internationally in growing numbers of people in the disability movement, who while recognising that gains have been made, feel the leadership of the movement has lost touch with the radical spirit of people power which first brought it into existence in the 1960s and 1970s. They argue for a return to the campaigning style street politics of Jenny Morris’s organisation, the Campaign to Stop Patronage, complemented by lobbying and strong links with radical trade union members as the way forward for the disability movement.
In examining the relationship between the Irish and the English working classes in the nineteenth century Frederick Engels observed:
“There can no doubt that henceforth the mass of the Irish people will unite ever more closely with the English Chartists and will act with them according to a common plan”. (Marx Engels 1978, p.59)
This notion that the oppressed have more in common than divides them should also be applied to the disability movement and the labour movement in joining together in a united struggle. Only out of this milieu will there arise a mass united front capable of bringing about a revolutionary transformation of society. This will be necessary if, as I have argued, we are not alone to realise a fully functioning social model of disability but in fact to go beyond the limitations of this model and guarantee not only equality in terms of civil and human rights but economic rights as well. This is already happening in Ireland with the growth of the United Left Alliance which had five TD’s elected in the General Election of February 2011 and in People before Profit and radical campaigns including Enough and Wright to Work.
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