Every two years, hundreds of disability activists from across Europe travel to Strasbourg to speak to Members of the European Parliament, to promote Independent Living issues, exchange ideas and information and to meet with old and new colleagues.
However, for every person who makes it to Strasbourg, there are thousands that cannot join the Freedom Drive due to the barriers they face as disabled people in their countries.
The Freedom Drive Campaign introduces you to disabled people who will not make it to Strasbourg this year. This is an opportunity to demonstrate to Members of the European Parliament the many ways disabled people are still being discriminated and excluded from the society. The Campaign aims to show that the human rights of disabled people are still being violated, despite the European Union’s and the Member States’ ratification of the UN Convention on the Rights of Persons with Disabilities.
The Freedom Drive Demands
To ensure the full implementation of the UN Convention on the Rights of Persons with Disabilities, the European Network on Independent Living urges the Member States and the European Union to take the following actions as a matter of priority:
1. Ensure Personal Assistance for all in need
Reinhart is from Belgium and requires assistance to live independently in his own apartment. He needs support with daily household tasks and to be able to work. As a young adult, he does not want to be dependent on his parents or the goodwill of his friends to lead an active life. In 2008, Reinhart applied for a Personal Assistance Budget – funding which would allow him to employ personal assistants. Although he was granted one, he is still on a waiting list five years on. There are over 6,000 disabled people on the waiting list in Flanders, with the priority given to those with life threatening conditions. For now, Reinhart pays for his own support, but knows that this is not sustainable.
2. Safeguard support services for disabled people against the cuts
The Independent Living Fund in the United Kingdom enables Mary to live a full and active life. She has carried the Olympic torch, participated in events to raise money for charity, enjoys long walks with her dogs and other social activities. The Independent Living Fund gives her the freedom to live her life the way she wants to. Without it, Mary would be dependent on a limited care package from her local authority, which would be sufficient enough only for fulfilling her basic needs – going to the toilet twice a day and eating. It would not be sufficient for her to leave her home or live an active life. The proposed closure of the Independent Living Fund – a decision taken by the Government without proper consultation or understanding of its impact on disabled people – means that Mary will soon be confined to her bed. This is a life Mary feels is not worth living.
3. End segregation of disabled people in institutional care
Valentin, a young man with intellectual disabilities from Romania, was abandoned at birth and spent his whole life living in institutions. He died at the age of 18, shortly after being admitted to a psychiatric hospital, where he was moved to from a children’s institution. Valentin died as a result of severe neglect and denial of medical treatment for HIV, an illness he contracted most likely at birth. An NGO monitoring conditions in institutions in Romania found him on the day of his death alone in a cold room, wearing only a pyjama top and lying in a bed without bedding. The staff refused to feed him or to take him to the toilet for fear of being infected with HIV. No one was found responsible for his death, and his case has been brought to the European Court of Human Rights.
4. Provide inclusive education for disabled children
Menno is 25 and lives in the Netherlands. When his parents learned he had intellectual disabilities, they decided to raise him like any other child without a disability. They enrolled him in a good primary school, where he learned alongside children of his own age. However, when it was time for him to go to secondary school, none of the mainstream schools would accept him. With no other option, he was enrolled in a ‘special school’. Neither Menno nor his parents wanted him to attend a school that is in a segregated environment and which failed to stimulate his development. They know his place is in the general education system.
5. Grant disabled people access to employment in the open labour market
Jaka is from Slovenia and has faced inequality throughout his life. When he was younger, he had to attend a boarding school, as there was no accessible school close to his home. To live independently, Jaka needs personal assistance, which he receives from a local NGO. However, personal assistance is not provided for in the legislation, which means that there is a constant threat it could be taken away from him. Jaka receives job coaching to help him get into work, but despite his university level education, he has not been able to secure employment in the past two years.
6. Give all disabled people the right to make decisions
Danijela, from Serbia, has spent her childhood living in foster homes and an institution for children with intellectual disabilities. Nine years ago she moved into supported housing provided by an NGO, and now lives in a nice apartment together with her partner. She leads a very active life and competes in various sports. Danijela enjoys working and has found a job in a local restaurant. Although her employer is very happy with her work, Danijela cannot get a full-time job or a salary, because she is under guardianship. This means that her ability to make important decisions about her life, to sign contracts or to have a job, has been taken away. The only reason for that is her disability.
7. Make the mainstream environment and services accessible for disabled people
Mareks is a young man from Latvia who became disabled about one year ago, after an accident. This changed his life immensely, as he became dependent on his family and friends for support in his daily routine. Mareks was given an electrical wheelchair, but that does not mean he can leave his apparentment. He lives on the fifth floor in a high-rise building without an elevator and cannot get alternative housing from his local authority. Among other, this means that he cannot access physiotherapy treatment, which is of great importance for his future. According to the new Personal Assistance law in Latvia, there can only be one assistant per person, which does not even leave the option of Mareks being carried out of his flat. Mareks describes his situation as a “trap”.
8. Protect the rights of disabled women
Tanya has spent her life advocating for the equal treatment of disabled women in Bulgaria. She was one of the small number of disabled people to study in a mainstream school. After graduating from the university, she became a journalist and published stories of disabled women who actively strived for an equal place in the labour market. Tanya herself has been paid less than her male colleagues and has struggled in an inaccessible environment, which her employer refused to adapt. Her work has also shown that disabled women experience higher levels of domestic violence, which often remains unreported.
The UN Convention on the Rights of Persons with Disabilities was ratified by 38 countries in Europe and the European Union.
Article 19 of the Convention recognises the “equal right of all persons with disabilities to live in the community, with choices equal to others”. State Parties to the Convention must “take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community”.
ENIL calls on the European countries and the European Union for the full ratification and implementation of the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol.