Disability and Disabilism
There is no universally accepted definition of "disability", although various attempts have been made to produce one. The World Health Organisation (WHO) in its International Classification of Functioning, Disability and Health (ICF) takes into account the social aspects of disability and does not see disability only as a "medical" or "biological" dysfunction. Two key concepts were distinguished by the WHO as follows:
Impairment: Any loss or abnormality of psychological, physiological, or body structure or function, for example, paralysis or blindness.
Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being1.
The UN Convention on the Rights of Persons with Disabilities (2006) states that "disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others". According to Article 1, "Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments…"2. The extent to which these impairments disable someone depends on the level of barriers encountered in society.
A recent position adopted by international organisations is that having a disability is a consequence of a dynamic interaction between, on the one hand, a person's health and other personal factors (such as age, sex, personality or level of education) and on the other, the social and physical environment in which they find themselves. This approach is referred to as the "social model of disability".
The WHO estimates that over a billion people, about 15% of the world's population, have some form of disability3 and that only about 5% of these disabilities are congenital. 80% of people with disabilities live in developing countries, according to the UN Development Programme (UNDP)4. The World Bank estimates that 20% of the world's poorest people are disabled.5
People with disabilities are referred to as the world's largest minority, but unlike most minority groups, this one always has open membership: any one of us could become a member at any time because of an accident, illness or ageing. Disability is thus part of a human condition. In the vast majority of cases disability is believed to be a result of social, economic or political factors, accident or armed conflict. Currently, there might be more factors present that contribute to the incidence of impairments, including environmental pollution, HIV/AIDS and drug abuse. Disability is also a development issue, because of its two-way link to poverty: disability may increase the risk of poverty, and poverty may increase the risk of disability6. As many as 50% of disabilities are preventable and directly linked to poverty7.
Groups within the disabled community may have a shared socio-cultural history. Some groups share a common language, such as American or French Sign Language, Braille, or even some specific terms which they use to talk about disability or themselves. They often share customs and traditions, such as celebrating disability awareness and pride. Today the disabled are often viewed as a specific cultural group within a diverse society. A disability culture can acknowledge and celebrate the lives of people with disabilities, recognising that these are not necessarily tragic, nor should they be devalued.
Question: Can you think of films or books where disabled people feature? Do they present a positive image of disability?
Eugenics and the threat to life
The right to life is a most basic human right; however, throughout history, there have been times when people with disabilities have had their lives threatened, because they were considered less worthwhile than "normal" people. The theory of Social Darwinism and the related Eugenics movement promoted the idea that the human "gene pool" could be improved by human intervention, and played major roles in labelling people with disabilities as "inferior". Eugenics reached its peak in Nazi Germany, resulting in the murder of more than 200,000 disabled people who were some of the earliest victims of concentration camps during the Second World War8. Although the movement has largely been discredited, eugenicist ideas and practices continue today in various forms, including forced sterilisation and selective abortion. Negative eugenics is the term given to the practice of discouraging or preventing people considered to be "unfit" from breeding. With the development of medical science, neo-eugenic beliefs are finding new supporters. Prenatal screening and amniocentesis provide prospective parents with the power to decide "who should and who should not inhabit the world".
Forced sterilisation in Europe
Five human rights groups united against forced sterilisation of women with disabilities in France. In August 2011, they submitted written comments9 to the European Court of Human Rights in the case of Gauer and Others v. France10, launched by five young women with mental disabilities who were sterilised without their knowledge or consent. The applicants stated that their rights to family life, to marry and to being free from degrading treatment and discrimination enshrined in the European Convention on Human Rights had been violated. The coalition of the five groups expects the Court to make a positive decision, and, in that way, reinforce the autonomy of women with disabilities with respect to their reproductive health. The case was still pending at the time of writing.
The Right to choose?
The disability rights movement has raised questions about "selective abortion", or abortion on the basis of foetal impairment. While the women's rights movement, appealing to the values of freedom and autonomy for women, tends to recognise women's unconditional right to have an abortion, selective abortion is very strongly opposed by disability rights activists. They claim that future parents should be provided with objective and unbiased information on disability, and be offered support. Should the above be available, it is likely that fewer women would opt to abort a disabled foetus. The UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) have gone some way towards recognising not only the rights of disabled people to have sexual relationships and experience parenthood, but also the need to address societies' prejudices on this issue. The UN Convention on the Rights of People with Disabilities establishes the rights to be free from torture and ill-treatment, to have respect for private and family life, to found a family and be free from discrimination on the basis of disability.
Question: Should parents be allowed to abort a foetus on the grounds that it has impairment? What could count as impairment?
Disability rights movement
Increasingly vocal and well-organised disability movements were behind the crucial paradigm change – change from viewing disability as a personal tragedy towards viewing disability as a human rights issue. The work of such disability movements led to a "nothing about us without us" approach to the issue, and to a policy shift from the medical model to the social and human rights-based models: from the "patient" to the citizen. The key issue is that people with disabilities should be entitled to the same rights as non-disabled persons, and that discrimination on the grounds of disability should be outlawed.
Medical and Social models of Disability
Before the 1970s, people with disabilities were viewed as medical failures and victims of circumstance, deserving of pity. These were the chief characteristics of the "medical model" of disability, which placed the problem firmly with the individual and assumed that only a medical "cure" could remove it.
Against this dominant model, a major shift in thinking took place in the 1960s, initially in the United States, with the "independent living movement". The paradigm shift sees the solution to the problem of disability in the restructuring of society and removal of barriers. This understanding of disability is referred to as the Social Model. It focuses on eliminating the barriers, promoting positive attitudes and making sure that laws and policies support the exercise of full participation and non-discrimination. It suggests that the individual and collective disadvantages suffered by people with disabilities are mainly a result of a complex form of institutional discrimination that is as deep-seated in our society as are sexism or racism.
|The Medical model asks:||The Social model asks:|
|What is wrong with you?||What is wrong with society? What social, economic, political and/or environmental conditions need to be changed to facilitate the full enjoyment of all rights by
all people with disabilities?
|Are your difficulties in understanding people mainly due to a hearing problem?||Are your difficulties in understanding people mainly a result of their
inability to communicate with you?
|Did you move here because of your health problem?||What deficiencies in your housing caused you to move here?|
|Does your health problem / disability prevent you from
going out as often or as far as you would like?
|Are there any transport or financial problems preventing you from
going out as often or as far as you would like?12
The medical model does still prevail in many countries today and the social model is not universally accepted or applied. Despite its undeniably important focus on social factors, the social model can miss out some essential personal factors, for example the pain involved in severe disability. One disability activist put it this way: "We can insist that society disables us by its prejudice and by its failure to meet the needs created by disability; but to deny the personal experience of disability is, in the end, to collude in our oppression".13 Disability activists acknowledge that the social model should go beyond saying that "disability is created by the environment". They argue that is important to see people with disabilities neither as passive victims of a medical impairment, nor as passive victims of the environment. Rather, they should be perceived as active agents with full entitlements to rights and capable of exercising autonomy over their own lives.
Social protection systems have often prevented disabled people from taking control of their own lives. Instead, they should facilitate the active participation of people with disabilities. This, however, needs to be coupled with the recognition that people with disabilities have a right to social support regardless of their potential contribution to society. Inclusion of people with disabilities also requires putting in place the policies and programmes that remove barriers and guarantee the exercise of civil, cultural, economic, political and social rights.
Equality and non-discrimination
Most of today's human rights concerns relating to disability are connected to discrimination. People with disabilities are entitled to exactly the same human rights as people without disabilities, yet they are subject to direct and indirect discrimination and exclusion in almost every area of life.
Either because of societal prejudices, or of structural problems in society, or because of their own impairments. This means that they often need positive efforts from society if they are to have an equal chance of participating. In particular, this can apply to areas such as access to information, health, education and employment. Positive action seeks to promote the representation of particular groups that have traditionally suffered from discrimination, with the aim of creating a more egalitarian society.
Non-discrimination includes the concept of reasonable accommodation that must be made for people with disabilities. Reasonable accommodation means carrying out, when necessary, appropriate modifications and adjustments, which do not impose a disproportionate or undue burden, so that people with disabilities can enjoy their human rights and fundamental freedoms on an equal basis with others14. Such reasonable accommodation applies, for example, in cases where a person with a disability is provided with tailor-made solutions and access to information, transportation, workplace, facilities and services. Its overall aim is to facilitate the person's participation in the community.
Disability is not specifically referred to in any of the key international documents on human rights drawn up before 1961, when the European Social Charter – the first international treaty including explicit provisions on the rights for people with disabilities – was adopted. Complementing the International Bill of Rights, the following key texts specifically address the rights of people with disabilities:
1971 Declaration on the Rights of Mentally Retarded15 Persons
1975 Declaration on the Rights of Disabled Persons
1982 World Programme of Action on Disabled Persons
1983-1992 International Decade of Disabled Persons
1993 United Nations Standard Rules on the Equalization of Opportunities for Persons with
1993 The Vienna Declaration on Human Rights
2006 UN Convention on the Rights of Persons with Disabilities (UN CRPD)
The creation of many key human rights instruments was triggered by the disability movements. While the core international human rights instruments offer significant potential to promote and protect the human rights of persons with disabilities, this potential has not yet been fully realised. This was the main reason for the creation of the new UN Convention on the Rights of Persons with Disabilities.
UN Convention on the Rights of People with Disabilities
The Convention was adopted in 2006 and is the first legally binding international UN instrument on disability, which sets out the minimum standards governments are obliged to meet in order to ensure that people with disabilities effectively benefit from their civil, political, economic and social rights. The Convention explicitly recognises disability as a human rights issue. While the Convention does not create new rights, it specifically prohibits discrimination against persons with disabilities in all areas of life, including civil rights, access to justice and the right to education, health services and access to transportation. The Optional Protocol to the UN CRPD allows for complaints to be submitted to the CRPD Committee by individuals and groups of individuals, alleging that their rights have been violated by states parties to the Protocol16.
The Convention underlines the greater risk of poverty for people with disabilities, and emphasises multiple discrimination faced by minorities, women or girls with disabilities. Importantly, the Convention stresses the unique obligation to actively involve civil society organisations of people with disabilities in its implementation. Article 3 of the Convention identifies a set of overarching principles that serve the interpretation and implementation of the Convention:
- Respect for inherent dignity and individual autonomy, including the freedom to make one's own choices, and independence of persons
- Full and effective participation and inclusion in society
- Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
- Equality of opportunity
- Equality between men and women
- Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
Of particular concern is the fact that people with disabilities are often subjected to the decision making of other people. Article 12 of the UN CPRD seeks to correct this approach, by recognising the legal capacity of people with disabilities and providing measures to support their right to exercise their legal capacity, for example, by eliminating the practice of appointing guardians who make decisions on behalf of persons with disabilities and, instead, providing support to people with disabilities so that they can make their own decisions. Respect of Article 12 is a prerequisite for realising some of other Convention rights, such as the right to political participation, access to justice or the right to have a family.
The Council of Europe and disability rights
The Council of Europe has been a leading human rights actor in the disability field. Its European Social Charter (1961) contains explicit provisions on the rights of persons with disabilities to independence, social integration and participation in the life of the community.
European Social Charter, Article 15
With a view to ensuring the effective exercise of the right of the physically or mentally disabled to vocational training, rehabilitation and resettlement, the Contracting Parties undertake:
1. to take adequate measures for the provision of training facilities, including, where necessary, specialised institutions, public or private
2. to take adequate measures for the placing of disabled persons in employment, such as specialised placing services, facilities for sheltered employment and measures to encourage employers to admit disabled persons to employment.
The Council of Europe adopted in 2016 a Strategy on the Rights of Persons with Disabilities (2017-2023).
The overall goal of the Strategy is to achieve equality, dignity and equal opportunities for persons with disabilities in specific areas where the Council of Europe can make an input. This requires ensuring independence, freedom of choice, full and active participation in all areas of life and society.
The strategy promotes work and activities around five priority areas:
- 1. Equality and non-discrimination
- 2. Awareness raising
- 3. Accessibility
- 4. Equal recognition before the law
- 5. Freedom from exploitation, violence and abuse
Action will also target five cross-cutting themes: participation, co-operation and co-ordination, universal design and reasonable accommodation, gender equality perspective, multiple discrimination and education and training.
The priority areas build on, and further develop the existing body of work by the Council of Europe, bringing added value to work done in other regional and international contexts, notably the United Nations and the European Union. The strategy is anchored in the UN Convention on the Rights of Persons with Disabilities and thus placed strong emphasis on the implementation of existing human rights standards.
EU Disability policies and actions
At the level of the European Union, the European Disability Forum (EDF) – a European umbrella organisation representing the interests of 80 million people with disabilities – has lobbied with others for the recognition of the rights of disabled persons. The result is a specific reference to discrimination on the grounds of disability in the Treaty of Amsterdam, and the EU Directive on Equal Treatment in Employment and Occupation, which prohibits discrimination in the field of employment on the ground of disability and encourages reasonable accommodation.
Article 26 of the EU Charter on Fundamental Rights (2000) recognises and respects the right of people with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community. In 2010 the European Commission adopted the EU Disability Strategy 2010-2020, which aims to empower people with disabilities so that they can benefit fully from participating in society and in the European economy.
The European Union has ratified the UN Convention on the Rights of Persons with Disabilities, becoming the first regional integration organisation to sign up to any human rights treaty18. All institutions and agents of the EU will have to endorse the values of the Convention in all policies under their competence ensuring the mainstreaming of disability: from transport to employment and from information and communication technologies to development co-operation. They will also have to adjust the accessibility of their own buildings, and their employment and communications policy.
Disablism can be defined as discriminatory, oppressive, abusive behaviour arising from the belief that disabled people are inferior to others. Disablism refers to prejudice, stereotyping, or "institutional discrimination" against disabled people. The main problem about disablism (also known as abilism or ableism19) is that it is not easy to identify. In many cases, people do not realise that it exists. Disablism is first and foremost about people's attitudes: it does not only refer to consciously discriminatory behaviour, but also to the way that people unconsciously relate to people with disabilities. The unconscious part of discriminatory attitudes is much harder to tackle than conscious acts of discrimination, but both need to be equally targeted in the struggle for human rights.
The vast majority of people would say that they are not against people with disabilities, and that may be true. However, the majority still do not consider people with disabilities as equal, and cannot appreciate the obstacles that exist in society preventing disabled people from living "normal" lives. For example, some people use parking spaces set aside for people with disabilities with the result that disabled drivers may have to turn back home. Disablism permeates all layers of society. Conscious disablism on economic grounds is widespread (for example, discrimination in hiring), but it is the unconscious disablism, resulting from ignorance or a general lack of understanding, which gives more cause for concern. This may show in an "attitude of apartheid", that is, the societal view that inclusive planning is not of high importance since people with mobility impairments have their own separate buildings and institutions, and means of transport. Disablism is also exhibited in the widespread use of separate and unequal entrances to public buildings for the disabled. A non-disablist environment would allow elderly people, mothers with small children and others temporarily or permanently impaired equal access to shopping centres and other public institutions or spaces.
Question: Which areas of your local environment would be inaccessible to you if you became disabled?
Mainstreaming disability is the process of assessing the implications for disabled people of any planned action, including legislation, policies and programmes, in all areas and at all levels.22 It is important to work towards the mainstreaming of disability in all youth issues, and towards the mainstreaming of youth in all disability issues. Both disability and youth need to be key concerns in formulating any policy. In order to design effective policies, a greater knowledge of disability issues by decision makers is needed and youth with disabilities themselves should take part in decision making. This will only be achieved through closer partnerships of state institutions with organisations of disabled people.
The challenge here is that there are few organisations representing the interests of disabled young people or being run by young people with disabilities. On the international and regional level, most active representatives of disability and youth issues include the International Federation of Hard of Hearing Young People, the Leonard Cheshire Disability Young Voices, the African Youth with Disabilities Network, the Pineda Foundation for Youth, the World Federation of the Deaf Youth Section, and the European Disability Forum Youth Committee.
International Federation of Hard of Hearing Young People (IFHOHYP)
IFHOHYP is an international NGO for national and regional youth organisations dedicated to hard of hearing young people throughout the world. The Federation works to improve the quality of life of hard of hearing young people and to promote equal rights for them at all levels of society. IFHOHYP is actively co-operating with the Council of Europe, for example in organising study sessions for hard of hearing young people, and has been a member of the Advisory Council of Youth of the Council of Europe on several occasions. Other activities of the Federation include international summer camps, training programmes, workshops and English language courses for young people with hearing impairment.
For decades, special schools for the disabled have been seen as a tool for segregation, and criticised for often being below par with mainstream education. There has been much debate over the advantages and disadvantages of segregated education and special schools, as opposed to mainstreaming special education in general education systems. Whatever the outcome of this debate, young people with disabilities and their families should have the right to choose between special and mainstream schools, based on the specific needs of a child. One key advantage of inclusive education is that the integration of disabled and non-disabled pupils in the first years of schooling can help to prevent prejudices and contribute to the overall inclusion of disabled people in society.
Some of the main problems faced by children and young people with disabilities are inaccessible school buildings or teaching materials, lack of staff trained in specific disability needs, direct and indirect discrimination. There should be opportunities for children and youth with disabilities at schools – whether inclusive or specialised – to learn life and social development skills needed for equal participation in education, to have peer support and mentoring, access to technologies and accessible methodologies.
Non-formal education and the active learning it provides can be more inclusive for people with disabilities than the formal education system. Due to limited possibilities within special education systems or to social exclusion, the lack of social, communications or foreign language skills is more prevalent among people with disabilities than their non-disabled peers. These factors make non-formal education particularly important for people with disabilities, since they can help to build up the necessary life skills which might not have been provided by their formal education. There is also a need to introduce the disability dimension more in mainstream training courses, by including activities that could bring participants in touch with dimensions that some may never have encountered before, or encouraging participation of disabled young people in the mainstream training courses.
The Erasmus Student Network (ESN), the Youth Agora and the European Disability Forum created the project ExchangeAbility with the support of the Council of Europe to make ESN accessible for disabled students at all the levels of its activities. The project, running in the academic year 2009-2010, aimed to increase the number of exchange students with disabilities and to create the best conditions for them during their stay abroad. A follow-up project with new partners was launched in 2010. Read more at www.exchangeability.eu.
Participation in society tends to be seen by disabled youth as key to their overall objective, which is to achieve full inclusion, with recognition of their particular needs and rights. Many young people with disabilities would like to be involved in mainstream organisations if this was possible. In mainstream organisations young people are able to meet each other because of a common interest. Young people with disabilities do not always have that option, because of both physical and psychological barriers23.
Barriers to greater participation include the absence of structures either at local or national levels for representation of disabled people and their concerns. Lack of information is another barrier. Information about whether buildings are physically accessible or whether there are facilities for the hard of hearing or the blind is often unavailable or inaccessible. This lack of information about accessibility – or sometimes the fear of inaccessibility – often prevents people with disabilities from participating in events.
One persisting obstacle to participation is self-identification: whether people perceive themselves as being "disabled" or as members of a "minority". Some disabled people do not want to see themselves as a minority, since this has negative connotations for them; others do not consider themselves to be disabled but as members of particular linguistic and cultural minorities. In terms of political participation, the right to vote is denied to many people with disabilities deprived of legal capacity, or when voting procedures are inaccessible.
When it comes to the participation and inclusion of people with disabilities, the media's role in raising awareness about disability rights and changing attitudes is crucial. The mass media often depicts disabled people as lying at one or other extreme: either being poor and to be pitied, or celebrated as heroes who dare to live. Such portrayal only contributes to stereotyping disabled people and not to understanding that they form a group as interesting and diverse as any other group in society.
No Barriers, No Borders
The SALTO booklet "No Barriers, No Borders"24 is about how to run international mixed-ability projects for young people with and without a disability. It provides specific tips and guidelines to youth workers and project organisers concerning, for instance, how to interact with people with different disabilities, how to fund youth projects or how to organise training courses for them.
2 Note: the term "handicap" is no longer considered appropriate or in keeping with the contemporary understanding of disability. Preferences for terminology among persons with disabilities and among geographic regions may vary. The individual wishes of persons with disabilities should be respected as much as possible.
3 WHO, "Disability and Health Fact sheet N°352", 2011: www.who.int/mediacentre/factsheets/fs352/en/index.html
4 United Nations, 2008, "Mainstreaming disability in the development agenda (E/CN.5/2008/6)": www.un.org/disabilities/documents/reports/e-cn5-2008-6.doc
5 United Nations, 2006, "Some Facts about Persons with Disabilities", International Convention on the Rights of Persons with Disabilities: wwww.un.org/disabilities/convention/pdfs/factsheet.pdf
6 WHO, "World Report on Disability", 2011: www.who.int/disabilities/world_report/2011/report/en
7 Department for International Development (DFID) 2000, "Disability, Poverty and Development", DFID, UK
8 Mckee, Barbara, Disabled and the holocaust: Disabled Persecution, 2004: www.eastrenfrewshire.gov.uk/holocaust/holocaust_remembrance_2004_-_other_victims/holocaust_remembrance_2004_-_disabled___the_holocaust.htm
9 Written Comments Submitted Jointly by Center for Reproductive Rights, European Disability Forum, International Centre For The Legal Protection Of Human Rights (Interights), International Disability Alliance, Mental Disability Advocacy Center, 16 August 2011: http://mdac.info/sites/mdac.info/files/Gauer%20v%20%20France_Submission_ECHR_FINAL.pdf
10 European Court of Human Rights, "Reproductive Rights, Factsheet", 2011:
11 UN Department for Economic and Social Information and Policy Analysis, 1994
12 Oliver, Michael, Understanding Disability: From theory to practice, 1996, Macmillan: Basingstoke.
13 Morris, Jenny, Pride Against Prejudice: Transforming Attitudes to Disability, 1991, Women's Press: London.
14 Handbook for Parliamentarians, No.14, 2007, From Exclusion to Equality Realizing the rights of persons with disabilities, UN and Inter-Parliamentary Union: www.un.org/disabilities/default.asp?id=212
15 The term "mentally retarded" is not up to date anymore and not in the line with contemporary understanding of disability.
18 Press release of the European Disability Forum, January 5, 2011: www.edf-feph.org/Page_Generale.asp?DocID=13855&thebloc=26586
19 Note: "Ableism" is a preferred term by some experts and researchers as it focuses not just on disability but the formation of abledness which is always in relationship with disability.
21 UN High Level Meeting on Youth, "Youth with Disabilities" Fact Sheet: http://social.un.org/youthyear/docs/Fact%20sheet%20youth%20with%20disabilities.pdf
22 Carol Miller and Bill Albert, "Mainstreaming disability in development: lessons from gender mainstreaming", 2005: www.dfid.gov.uk/r4d/PDF/Outputs/Disability/RedPov_gender.pdfp
23 "Young and Disabled: Daily Challenges for Equality", EDF Youth Committee publication, 2009: www.edf-feph.org/Page.asp?docid=18486&langue=EN
24 "No Barriers, No Borders", SALTO-YOUTH Inclusion Resource Centre, 2008:
- 3 DecemberInternational Day of Disabled Persons
- Second Thursday in OctoberWorld Sight Day