Chapter 1   Disability, Ableism and Inclusion

1.1. Concept of Disability

Disability has been defined by a medical approach up until recently. This approach was dominantly based on pity and charity towards people with disabilities, which should be “cured” or “fixed” in order to fit in society. Disability movement has worked actively to overcome this medical model and to spread a notion of disability based on a social approach. While the medical model is based on the persons’ “lack of ability” due to their “impairment”, the social model focuses on “disability” due to surrounding barriers, which are put by society itself. Misconceptions, stigmas and stereotypes about disability as well as inaccessible environments create barriers for people with disabilities from attaining their right to full and equal participation in society.

The UN Convention on the Rights of Persons with Disabilities (UNCRPD) states that “disability is an evolving concept and 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”. UNCRPD -entered into force on 3 May 2008- also defines “persons with disabilities” as persons including those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others”. Therefore, the notion of “disability” is not fixed and can alter, depending on the prevailing environment from society to society. Disability is not considered as a medical condition, but rather as a result of the interaction between negative attitudes or an unwelcoming environment with the condition of particular persons.  Examples of these can be seen everywhere from stairs into buildings, reading materials in inaccessible formats, and prevailing negative attitudes towards persons with disabilities. The more barriers, the less likely persons with disabilities are able to participate in society. By removing attitudinal and environmental barriers – as opposed to treating persons with disabilities as problems to be fixed – those persons can participate as active members of society and enjoy the full range of their rights.

The Convention does not restrict coverage to particular persons; rather, the Convention identifies persons with long-term physical, mental, intellectual and sensory disabilities as beneficiaries under the Convention.  The reference to “includes” assures that this need not restrict the application of the Convention and States parties could also ensure protection to others, for example, persons with short-term disabilities or who are perceived to be part of such groups.

People with disabilities are considered the world’s largest minority. WHO (World Health Organization) estimates that over one billion people, about 15% of the world’s population, have some form of disability in the world today. Increasingly vocal and well organised disability movements changed the paradigm 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 with the following key principles; inclusion, participation, accessibility, non-discrimination, respect for difference and diversity, equality of opportunities and respect for inherent dignity. Persons with disabilities are part of human diversity and being human has a broad spectrum of possibilities including many ways of walking, seeing, thinking, communicating, interacting, etc. Despite all the differences, persons with and without disabilities are part of the same society and have the same rights and obligations.  

1.2 Ableism

Ableism is the social prejudice against people with disabilities and discrimination based on the belief that typical abilities are superior and disabled people are inferior. It mostly shows itself in the forms of obvious oppressive, abusive behaviours however it does not only refer to consciously discriminatory behaviours 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. For example discriminatory approach in hiring/not hiring people with disabilities is an ableist act but failing to incorporate accessibility into building design plans or talking to a person with a disability like they are a child are also ableist actions.

Some other examples of ableism:

• The assumption that people with disabilities want or need to be ‘fixed’
• Using disability as a punchline, or mocking people with disabilities
• The eugenics movement of the early 1900s
• The extermination of people with disabilities in Nazi Germany
• Choosing an inaccessible venue for a meeting or event, therefore excluding some participants
• Framing disability as either tragic or inspirational in news stories, movies, and other popular forms of media
• Using the accessible bathroom stall when being able to use the non-accessible stall without pain or risk of injury
• Questioning if someone is “actually” disabled, or “how much” they are disabled

1.3 Types of Disability

Disability types include various impairments that can hamper or reduce a person’s ability to carry out their day-to-day activities. These impairments can be termed as disability of the person to do his/her day-to-day activities. Disability can be broken down into a number of broad sub-categories, which include the following 8 main types of disability:

Mobility/Physical disabilities

Disability in mobility can be either an in-born or acquired with age. It could also be the effect of a disease. People who have a broken bone also fall into this category of disability. This category of disability includes people with varying types of physical disabilities, including; upper or lower limb(s) disability, manual dexterity impairment.

Spinal Cord Injuries

This kind of injury mostly occurs due to severe accidents. The injury can be either complete or incomplete. In an incomplete injury, the messages conveyed by the spinal cord are not completely lost. Whereas a complete injury results in a total dysfunctioning of the sensory organs. In some cases, spinal cord disability can be a birth defect.

Head/Brain Injuries

A disability in the brain occurs due to a head/brain injury. The magnitude of the brain injury can range from mild, moderate and severe. There are two types of brain injuries; Acquired Brain Injury (ABI) and Traumatic Brain Injury (TBI).

Visual impairment

Visual impairment is defined as a decreased or totally lost ability to see to a degree that causes problems not fixable by usual means, such as glasses or medication. Visual impairment can be due to disease, trauma, brain and nerve disorders, congenital or degenerative conditions. Terms mostly used to describe people with visual impairments are “partially sighted”, “low vision” and “totally blind”. Eye disorders which can lead to visual impairments can include retinal degeneration, albinism, cataracts, glaucoma, muscular concerns that result in visual disturbances, corneal disorders, diabetic retinopathy, congenital disorders, and infection.

Hearing impairment

Hearing loss, deafness, hard of hearing or hearing impairment, is defined as a partial or total inability to hear. Hearing loss is caused by many factors, including genetics, age, exposure to noise, illness, chemicals and physical trauma. People who are partially deaf can often use hearing aids to assist their hearing. Deaf people use sign language as a means of communication. There are a wide variety of hearing disabilities, ranging from people that can hear when they use assistive equipment (hearing aids, cochlear implants..etc), to people who do not hear anything. People that were deaf at birth have learned to communicate in visual ways (e.g. sign language has its own grammar, lexicon and idioms). Speaking or writing a verbal (foreign) language is often a second or third language for them. Some Deaf or hard-of-hearing people can lip-read and some use sign language. There are a number of Deaf people who have a speech impairment but others speak fluently. Deaf does not mean mute and mute does not mean Deaf.

Speech impairment

A speech disorder refers to any condition that affects a person’s ability to produce sounds that create words. Speech disorders affect a person’s ability to form the sounds that allow them to communicate with other people. They are not the same as language disorders. Speech disorders can affect people of all ages. Some types of speech disorder include stuttering, apraxia, and dysarthria.

Cognitive/Learning

Learning or intellectual disabilities are defined by diminished cognitive and adaptive development. Some cognitive disabilities have a base in physiological or biological processes within the individual, such as a genetic disorder or a traumatic brain injury. Other cognitive disabilities may be based in the chemistry or structure of the person’s brain. Persons with more profound cognitive disabilities often require assistance with aspects of daily living. Persons with minor learning disabilities might be able to function adequately despite their disability, maybe to the point where their disability is never diagnosed or noticed. (e.g: Down Syndrome, Autism spectrum, Dyslexia, Dyscalculia, Dementia, ADHD)

Psycho-social disorders

A psychosocial disability arises when someone with a mental health condition interacts with a social environment that presents barriers to their equality with others. Psychosocial disability may restrict a person’s ability to: be in certain types of environments. concentrate. have enough stamina to complete tasks. Some examples of psychosocial disabilities include: Mood disorders; such as depression and bipolar disorder, schizoid disorders; such as schizophrenia and schizoaffective disorder, anxiety disorders; such as anxiety disorder, obsessive-compulsive disorder, and post-traumatic stress disorder.

Invisible disabilities

Not all disabilities are visible. An invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings,  false perceptions, and judgments. Invisible disabilities are such symptoms as debilitating fatigue, pain, cognitive dysfunctions and mental disorders, as well as hearing and eyesight impairments and more.

Short Stature/Dwarfism

Dwarfism is short stature (abnormal skeletal growth) which can be caused by over 300 genetic or medical conditions. It is generally defined as an adult height of 4 feet 10 inches or less, with the average height of someone with dwarfism being 4 feet (Mayo Clinic). Children with dwarfism may experience a delay in developing motor skills, however, dwarfism does not have a link to any intellectual disability.

Persons who look different

Some people may not be limited in their life activities, but they are treated as if they have a disability because of their appearance. People with facial differences, such as cleft lip or palate, cranio-facial disfigurement, or a skin condition; people who are above or below the average height or weight; people who may display visible effects of medication, such as a tremor—in short, people who look different—have the frequent experience of finding people staring at them, looking away or looking through them as if they are invisible.

Persons with Tourette Syndrome

Persons with Tourette Syndrome may make vocalisations or gestures such as tics that they cannot control. A small percentage of people with Tourette Syndrome involuntarily say ethnic slurs or obscene words.

Cerebral Palsy

Cerebral palsy is an impairment that makes it difficult for the person to control their muscles, which has an effect on their movements and sometimes speech (in varying degrees). But this doesn’t mean that they have limited intellectual capacities or a cognitive disability. Therefore, it’s better to start interaction assuming the highest possible level of intellectual skills and simplify if this person with cerebral palsy also has cognitive disability.

1.4 Concept of inclusion

Social inclusion means improving participation for all in society through enhancing opportunities, equal access to resources, having a voice and respect for everybody ́s rights. It requires the distribution of opportunities and resources in a way that minimises disadvantage and marginalisation.

Inclusion is a human right. The UN Convention on the Rights of Persons with Disabilities recognises the right to equality in education and participation of people with disabilities.

-Inclusion is about:

• encouraging the intercultural encounters to considerer diversity as a richness, not a danger
• enabling ALL the youngsters of all backgrounds, especially those more excluded/vulnerable and/or with fewer opportunities:
• to have the same opportunity and co-create the framework with respect to all needs and backgrounds, especially with respect to learning/education, and access to youth work and the labour market in general
• to be listened, heart and given the safe space to express themselves, as well as taking part in their communities and in decision making processes
• to take part in Youth action and have their say and to influence at the end of the day the shaping of the evolving-Europe
• to provide access for everyone to empowering resources and processes
• taking into account the needs of young people and youth work organisations
• and engaging in general all the professional multi-level experiences (educators, youth workers, psychologist, sociologists), volunteers forces and stakeholders involved in the youth policies development, as well as in sustainable development policies in general

So, it is about enlarging the participation of all the youngsters and deepening their participation in terms of reach and impact of the participation process, as well as, to some extent, including all the stakeholders.

Hrere are a few inclusive glossaries about inclusion and diversity: https://students.wustl.edu/glossary-bias-terms/

https://epi.washington.edu/sites/default/files/website_documents/DEI%20Glossary_Formatted_20190711.pdf

https://seramount.com/research-insights/glossary-diversity-equity-and-inclusion/