Persons with disabilities have long been cut off and forced to lead lives of isolation, in large-scale institutions or the back-rooms of family homes.
Ironically, this has sometimes been inflicted on them with good intentions, in the name of charity, care, welfare or medical rehabilitation. Over time, it has become an accepted feature of our societies’ traditional attitude towards persons with disabilities. The actual result of this attitude has been that a significant part of the European population has been stripped of their dignity and their most fundamental human rights.
A shift in thinking has finally taken place in the last decades, recognising the need for our societies to act collectively in order to remove the barriers that hinder persons with disabilities from living among and contributing to our communities. This new approach regards persons with disabilities as subjects of their lives, entitled to their human rights on an equal basis with everyone else.
Landmark UN Convention
Perhaps the most prominent symbol of this attitude change is the UN Convention on the Rights of Persons with Disabilities (CRPD), which entered into force in 2008 and is now ratified by most European states. Given the key importance of living independently and being included in the community for the exercise of other rights, it is not surprising that Article 19 of the CRPD defines this as a distinct right.
The crucial concept defining this right is choice. Persons with disabilities should have choices equal to others, including on where and with whom to live. They should not be obliged to live in a particular living arrangement. This presupposes that their choices are recognised as being of equal value to everyone else’s.
The Convention recognises that people with disabilities are not limited in their choices because of an impairment, but because of shortcomings in the social and physical environment in which they live. The appropriate response is two-fold. First, community services and facilities for the general population should be available on an equal basis to persons with disabilities and be responsive to their needs. Second, each individual must receive the appropriate community support services, including personal assistance, in order to live their life being fully included in the community, in accordance with the living scheme they choose.
The two responses are directly linked to one another: making general services more accessible for everyone will naturally reduce the need for individual support.
Violations of the right to being included in the community
There are different ways in which the right of persons with disabilities to be included in the community is violated: when those who need some form of support in their everyday lives are required to relinquish living in the community in order to receive that support; when support is provided in a way that takes away people’s control from their own lives; when support is altogether withheld, thus confining a person to the margins of the family or society; or when the burden is placed on people with disabilities to fit into public services and structures rather than these services and structures being designed to accommodate them.
The most blatant violation of this right is segregation in large institutions. Even today, institutionalisation affects the lives of more than a million people with disabilities across Europe. As I have witnessed on many occasions, confinement in institutions is not only a violation of Article 19 by definition, it also increases the risk of exploitation, violence and abuse.
Recently in its judgment in the case of Stanev v. Bulgaria, the European Court of Human Rights recognised that life in an institution can amount to a violation of the right to liberty. In doing so, the Court took into account the distance and isolation from the community Mr Stanev experienced, the institution’s regimented daily schedule, the rules on leave of absence, the lack of choice in everyday matters, and the lack of opportunity to develop meaningful relationships.
This is why it is imperative that all member states of the Council of Europe stop new placements in institutions and develop transition plans for replacing institutions with community-based services, backing them up with clear targets, timetables and investments.
In countries which have started such transitions, a worrying trend is the replacement of large-scale institutions with medium-sized ones, or living arrangements which, while being physically in the community, do not afford the control over one’s life and meaningful contact with the community that Article 19 of the CRPD requires. It is important that states recognise this problem and counteract this tendency without fail.
Beyond deinstitutionalisation
However, deinstitutionalisation in itself is not sufficient. Many more persons with disabilities are isolated within their own communities due to the inaccessibility of schools, the labour market, health care, transportation or other facilities and a lack of community-based support schemes.
States should review the nature and purpose of services offered to persons with disabilities, with a view to enabling them to lead the life they prefer. The goal here should be individualising service provision, as well as maximising choice and control for the users of support services. These services should not be bundled together so as to compromise that choice, nor should they be imposed on the users by default. On the contrary, persons with disabilities should be enabled to purchase their own supports to the largest possible extent and access housing in the general housing market.
There is a need to define a level of support below which one’s dignity and ability to be included in the community is compromised. Any person should be empowered to enforce their entitlement to this level of support.
Given the multi-faceted nature of the right to being included in the community, implementation is likely to be a long process in many contexts. This is why it is essential that this process be closely monitored through independent mechanisms which should guide policy-makers. In accordance with the UN Convention, such monitoring must take place with the full participation of persons with disabilities and their organisations.
Thomas Hammarberg