To give greater definition to the term and understand what it means for people with disabilities, it is important to understand how the concept entered the social discourse. Inspired by the international disability rights movement, activists with disabilities started using the term “inclusion” to raise awareness of the many forms of discrimination they face and give a name to their objective of achieving equal participation. In light of the many experiences faced by people with disabilities such as involuntary placement in institutional care and/or special needs schools, exclusion from public transport and from public, cultural and political life, various questions ensued, including: Who belongs? Do I belong? Am I relevant? Are my experiences relevant? How can I take part? How can I voice my interests? How can I shape my life the way I want?
These questions are of fundamental importance to all human beings. They implicitly call for full participation and integration in society. The overarching term “inclusion” hence entered the public debate. Meanwhile, activists with disabilities succeeded in raising awareness of their specific exclusions and building on this, contributed their political demands to the debate surrounding the implementation of the UN CRPD. Thanks to the UN CRPD, inclusion was finally given a legal framework and has since gained more attention. This, coupled with the various parties’ highly conflicting interests – e.g. of the so-called disability assistance community and of policymakers – has meant, however, that the definition of “inclusion” is still vague and subject to much interpretation.
People with disabilities have the following expectations of inclusion:
In other circles, however, the term inclusion – when considered in the context of tight budgets, low staffing levels, conceptual uncertainty and a conflicting attitude towards persons with disabilities – can trigger defence mechanisms.
One thing is certain: inclusion requires sufficient financial resources as well as a willingness to make changes at the structural, institutional and personal level.
The concept of inclusion is central to the UN CRPD, which is designed to further and implement the rights and equal opportunities of persons (with disabilities). There is a general consensus that inclusion needs to be given a broad interpretation, meaning that it should not relate exclusively to persons with a disability but also those subject to other forms of discrimination related, e.g., to age, background, religious beliefs or sexual orientation/identity. In this context, inclusion means recognising exclusion mechanisms, then ensuring they cannot be applied and taking steps to eliminate them. In the same way as all UN human rights conventions so far have reflected, informed and transformed public debates and attitudes, the UN CRPD, too, has effected some broad paradigm shifts. While the majority of people still associate “disability” with suffering, dependence and helplessness, the UN Convention’s General Principles include “...respect for difference and acceptance of persons with disabilities as part of human diversity and humanity”.1 Here, persons with disabilities are not considered objects requiring care and assistance, but as human beings with a right to equal opportunities. Conceptually speaking, the needs that result from living with an impairment and encountering barriers lead to certain rights. The rights afforded to persons with disabilities are not seen as giving them more opportunities than to others, but as creating as much equality between persons with and without a disability as possible. With this in mind, existing human rights were reviewed and reworded to reflect the realities and different situations faced by persons with disabilities. Accordingly, the UN CRPD reaffirms “the universality (...) of all human rights and fundamental freedoms and the need for persons with disabilities to be guaranteed their full enjoyment without discrimination.”2
1. UN Convention, Article 3 (General Principles), (d)
2. UN Convention, Preamble, (c)
The basic prerequisite for implementing inclusion and equal opportunities for persons with disabilities is the removal of barriers so as to give them access to all areas of society. The UN CRPD has two definitions of barriers – attitudinal and environmental – which, when encountered by persons with impairments, hinders their full and effective participation in society.3 In other words, it is these attitudinal and environmental barriers that turn an impairment into a disability.
For the youth work community, this means bearing in mind that any barriers inherent in the activities and programmes (or access thereto) will result in a disability. It follows that organisations must scrutinise their planned activities and programmes to ensure they present no barriers to access for all young people. However, since the situations and realities faced by young people with a disability can vary widely, it is not possible to define a general standard that would ensure absolute accessibility. All activities and methods should be carefully reviewed to verify whether they can be accessed by
While accessibility for everyone cannot be ensured from the word go, organisations should consider which groups can participate in their activities and then explicitly invite them while stating clearly that their needs have been catered for. For instance, they may wish to attach an objective, detailed description of the available facilities and support. This would help potential participants to decide whether the activity or programme is suitable for them or not. In line with the human rights approach, the basic assumption should be that all young people want to participate, before proceeding to consider which barriers need to be addressed and what kind of support needs to be given so that full participation for everyone is possible.
In the case of young people with a disability, this requires a major paradigm shift. Whereas organisations may have previously asked themselves
they now need to ask
It is vital that when an invitation is extended, no terms and conditions may apply; in other words, that potential young participants with a disability should not be expected to have certain skills or be independent to a certain degree before they can join the activity.
3. Cf. UN CRPD, Preamble (e)
One of the most fundamental human rights is the right to education. Article 24 of the UN CRPD contains a precise definition of how this right is to be realised for persons with disabilities, namely without discrimination and on the basis of equal opportunity, ensuring an inclusive education system and lifelong learning at all levels and in all formal and non-formal educational settings. Article 24 uses the term “inclusion” in the context of all forms of education. This includes an inclusive educational system at all levels that allows for the full development of human potential and sense of dignity and self-worth, and that enables persons with disabilities to participate effectively in a free society.4
When considering the various dimensions of the educational process (different people, political, structural, emotional and experiential levels and dimensions), it becomes clear that inclusive change impacts on all of these. Let us use the political and emotional/experiential dimension to illustrate this.
4. “Shadow” translation by NETZWERK ARTIKEL 3 e.V. (2009) of the UN Convention on the Rights of Persons with Disabilities, Article 24 (Education) (a)-(c)
Experience has shown that political and structural dimensions often start to appear n cases where measures begin to be designed with persons with disabilities in mind, initially not necessarily for political reasons. One example of such a not immediately obvious political dimension is international volunteering and mobility schemes for persons with disabilities. It is not enough to restructure these schemes since the right of persons with disabilities to take part in such schemes is not yet recognised as a form of participation. Accordingly, current legislation in Germany requires this target group to overcome much higher barriers in order to claim support for mobility and assistance during an international assignment, provided it is even available in the first place. What is more, the relevant provisions in Germany’s Social Code and the division of responsibilities between Books 8 and 12 of the Social Code have a discriminatory impact on young people with a disability. Thankfully, the support available under Book 12 of the Social Code has now been dovetailed with the services provided under Book 8 of the Social Code, which has improved the situation as regards child and youth welfare services for young people with and without disabilities5.
Young people with a disability who wish to take part in an exchange or volunteering scheme and their parents are often left entirely to their own devices when it comes to asserting their rights to mobility and assistance; plus, they frequently struggle with the unclear division of responsibilities under the law. Providers of international schemes of this kind need to design their activities in such a way that already prior to departure, they can offer applicants support in managing these legal obstacles by, e.g., referring them to the right points of contact.
This example shows that there are many obstacles that have a structural and political dimension and that need to be addressed when designing inclusive international schemes.
5. For more information on this subject, please refer to publications on the “Große Lösung” (big solution) and articles by Christiane Möller
Accessibility is one of the basic prerequisites for the full and independent participation of and contribution by people with disabilities in seminars, training courses or exchange programmes. This is also true when it comes to designing curricula and methods, where environmental as well as attitudinal barriers need to be addressed. Attitudinal barriers are often referred to as “barriers in our heads”, examples of which include how one interacts with persons with disabilities, the roles that are assigned to them, and prejudice and discrimination. To minimise these barriers, seminars have to be designed to be fully accessible without focusing on the deficits of individuals and isolating them from the group owing to their personal needs. For instance, if images are shown during a presentation they should be described aloud for the benefit of all those present, in a casual manner and without emphasising that this is being done for a blind participant.
Accessibility also means cultivating an attitude that involves designing all information, all descriptions and all instructions (at least at the planning stage) in such a way that all persons can understand and act on them. For instance, information and instructions could be phrased using the multisensory principle, meaning that everything that is to be made visible should also be audible (and vice versa), so that content can be accessed in more ways than one.
Even though the curriculum may have been designed carefully, it will still be necessary during the actual event to look out for and address any specific needs. If there is uncertainty concerning a given situation, decisions should not be made over the participant’s head. Instead, the participant should be asked whether the font is big enough or if they can hear the speaker clearly – after all, they are best placed to state what kinds of needs they have. When applying a lot of methods or working in didactic contexts, in particular, it makes sense to have a variety of perspectives in the team, meaning it should be composed by people with a variety of impairments; this also releases organisers of the burden to have to know and consider everything themselves.
From a methodological point of view, it is important to bear in mind that young people with a disability have their own interests to represent; they are not there as props to help improve other people’s social skills. Their autonomy and sense of independence hence has to be strengthened by ensuring maximum accessibility and/or using assistants.
This is particularly important when it comes to building long-term relationships, where the concern is not for one person to help and the other to accept it.
Rather, relationships should be the result of shared experiences and of working together to resolve the conflicts that are inherent in everyday life and the differences between people.
In other words, inclusion does not mean simply to have persons with disabilities in a group. As in all heterogeneous groups, it is not enough simply to make sure that a group is diverse. There needs to be an atmosphere that allows for a dialogue on what is similar and what is different; one that naturally creates a respectful regard for different strategies. If this is not possible, the group will not come together.
Finally, a few points to illustrate the link between the fundamental principles of non-formal education and youth work and the principles that govern the implementation of inclusion. They show how much inclusion can contribute towards youth work both methodologically and conceptually.
Resource orientation is all about focusing on the abilities that young people bring to the table, rather than on their perceived deficits or perceived lack of development. The progress they make should be measured against the yardstick of what it means for them in their everyday lives.
The principle of appreciation in applied education and youth work is another major factor when it comes to implementing inclusion.
Developing an awareness of one’s own dignity and that of others is highly relevant in this regard.
When we talk about appreciation, we learn to consider what our values are, how we recognise what is valuable, and what we appreciate as valuable. Maybe an athletic performance? Or an intellectual feat? Do we only consider physical integrity and regular proportions beautiful?
What do we assign value to? Do we assign equal value to different abilities and ways of life?
Learning appreciation requires self-reflection. It is impossible to boost the self-esteem of young people with a disability if we believe that a life with an impairment is worth less than one without.
Working with young people is all about assisting them in enjoying equal opportunities and participate in society. To help young people with a disability to achieve this, it is important to understand that when we include people with a disability, it has nothing to do with charity or social engagement. We do so because we want them to claim their right to equal opportunities and participation. Here, again, it is important to recognise the mechanisms of exclusion that stand between them and participation and visibility.
What attitudinal barriers, what prejudices prevent young people with a disability from enjoying equal opportunities and participation? Participation means that all young people, including those with a disability, can experience new things, extend their horizons and share what they have learnt with others. Participation implies a potential for empowerment for everyone, which is the overarching objective.
If we take empowerment for young people to mean that they can participate, know their rights, take action on their own behalf and for others, and play an active role in the community, then this is all the more true for young people with a disability.
In this context, empowerment is all about creating spaces that respect the realities they face and consider the issues that are important to them. Many young people with a disability report that they share many of the same experiences with other young people, but that they do also experience others. For instance, from a young age much attention will have been given to their deficits and medical histories, and they will have experienced exclusion and discrimination. In addition, they may want to disengage from their parents and become more independent, yet this often conflicts with their need for assistance and possible mobility issues.
Young people with a disability learn at an early age that they do not appear to conform to common aesthetic ideals, performance-related expectations and values. Even if they succeed in feeling valuable, beautiful and attractive and developing strong self-esteem, they will repeatedly encounter situations in which their value as human beings seems impaired.
To achieve real inclusion, everyone has to reflect on their own attitudes and expectations concerning impairment and/or disability. It is important to understand that people with disabilities need to have role models who also have disabilities, in other words: who are their peers.
When working to empower young people with disabilities, it is vital to strengthen their independence (especially if they are heavily dependent on assistance), their skills and assets, and their ability to shape their own lives. It is of great advantage when providers of educational activities for young people are familiar with the realities faced by young people with a disability and have given ample thought to the principles of independence and the importance of personal assistance and mobility.
Young people with a disability will always have to deal with the impairments they have, but there is much we can do to ensure that they do not have to struggle with discrimination and exclusion as well.
Working towards inclusion pushes all of us to our limits. It confronts us with barriers; it forces us to reflect on our values; it opens our eyes to the experiences of people with a disability. Confronting and embracing inclusion is a profoundly human experience that is beneficial to us all.