In Europe, we have yet to see much action on the UN Convention on the Rights of People with Disabilities (CRPD), despite the fact that it has been ratified by the European Union, all EU countries have signed it, and some Central and Eastern European countries were among the first in the world to ratify. While every part of the CRPD is important, Article 19, on the right to live independently and be included in the community, is critical in the many countries globally where the predominant form of care for people with disabilities is to segregate them from society in long-stay residential institutions. As long as people are locked up in institutions, they will continue to be denied their full rights under the Convention (such as equal recognition before the law, Article 12, or respect for home and the family, Article 23).
Although the original motivation for relegating people with disabilities to institutions may have been altruistic, institutions have become an end in themselves, fiercely protecting their existence and resisting any change. The real evil of institutions is the denial of basic human rights. In the 1970s, Burton Blatt, a renowned advocate for people with intellectual disabilities, said that “if there is hope in what we have learned in our examination of institutionalization, it is not any improvement of institutional life—imprisonment and segregation can be made more comfortable, but they can never be made into freedom and participation.” Denying the average citizen freedom and participation in society would be a scandal of the first degree, but the “us and them” mentality makes it acceptable to do it to people with disabilities.
How does this sound: you get woken up at a certain time every morning, regardless of what day of the week it is, and regardless of how tired or unwell you might be. You get some clothes from a common locker that is always locked except at dressing time; it doesn’t matter if they don’t fit. You get herded to a cafeteria where you get what someone else has decided you’ll have for breakfast. Then you spend the rest of the day sitting around in a day room watching a program on TV that someone else has decided you’ll watch. The monotony might be broken by a shower—but not today, it’s not shower day. Then back to the cafeteria for lunch en masse, followed by a herding back to the day room for an afternoon of more mind numbing nothingness. And if you complain about that schedule, you are likely to be punished—perhaps a hair cut as punishment? Or wearing pajamas all day as punishment? Or getting locked up in solitary confinement? No problem, someone else will decide that. So, how does that sound? Like living hell? I can assure you that it is.
The CRPD is the first international human rights treaty to expressly recognize the right of all people with disabilities to live and participate in the community as equal citizens. By ratifying the CRPD, governments have made a commitment to ensuring that people with disabilities can live, and participate fully, in their communities. Article 19 requires States to take appropriate measures to facilitate “full inclusion and participation in the community” of persons with disabilities. Irrespective of the quality of care in institutions, the practice of isolating and segregating people with disabilities in long-stay institutions is in itself a violation of their human rights under Article 19. The CRPD, and Article 19 in particular, blasts the “us and them” mentality out of existence. There is no “us and them,” there is only “us” and we are all equal.
It is in the spirit of advocating for the implementation of Article 19 that the Open Society Foundations have prepared a guide and a checklist so that advocates everywhere can push for concrete and prompt action to introduce the necessary reforms so that all people can realize their right to live in the community. It does so by providing a detailed analysis of the scope and purpose of Article 19, and by setting out a range of steps governments will need to take in order to comply with the CRPD. We see these materials as working documents and we encourage you to send feedback to [email protected]. Let’s make ratification into real action!
December 3 is the International Day of Persons with Disabilities–a day that marks the pursuit of full participation and inclusion of persons with disabilities in society. This post is part of a blog series that reflects on our work to advance the rights of persons with disabilities around the world.