Never Give Up

In March of 2007, Iceland signed (but did not ratify) the UN Convention on the Rights of Persons with Disabilities. One of the guiding principles of the convention is respect for “individual autonomy, including the freedom to make one’s own choices.” Self-determination is one of the underlying principles of the Independent Living Movement (IL) which emerged out of the U.S. in the 1970s. Disabled people were argued to be the most knowledgeable about their own needs. Direct payments became a cornerstone of the Movement so that disabled people could freely choose and manage their own assistance, rather than relying on the state-managed services about which disabled people have little say or control. However, direct payments are still not an official service option in Iceland. The situation for disabled people in Iceland regarding self-determination remains stubbornly out of step with much of Europe and North America.
In recent years an IL Movement has emerged in Iceland. Among their goals is to make direct payments and user-led services a reality for all disabled people, if they so wish. The Grapevine asked a key figure in the Icelandic IL Movement—Freyja Haraldsdóttir—for some of her thoughts on what IL means, the importance of direct payments, and her concerns for the future. Freyja is one of the founding members of SSL (Samtök um sjálfstætt líf –The Independent Living Movement in Iceland) and is also a member of a work group whose goal is to start a co-operative for user-controlled personal assistance run by disabled people. She is currently studying social pedagogy at the University of Iceland.
Can you explain what is meant by independent living, direct payments and user-controlled services? Why are these things important for many disabled people?
Independent living really just says that the society should make it possible for disabled people to live just like non-disabled people. Instead of using the service that the service system offers, with direct payments you get some amount of money that you ‘cost’—if we can think of it that way—and then you can choose yourself how you spend the money or in what way you want to use it to have some assistance. So you can have your own company and hire your assistants. Or, like in Sweden, Norway and elsewhere, you can go to this co-operative which is owned by disabled people and they will help you to take care of the payments, and offer peer support and courses—both for the employer and the assistants. You can also go to some private companies and have this kind of support there. So you really just choose how you want to have it.
I think first of all the existing service for disabled people, like it has been through the years, is based on the medical understanding of disability. The system is complicated and is led by professionals who really believe they know what’s best for service users and their families. And they take little account of the rights and needs of the users. The service providers are also assessing the needs, they are providing the service, and they are paying for it—so that explains a lot. So that’s one thing. And I think knowledge about the United Nations Convention and independent living has not been spread out enough, either to disabled people and their organisations or professionals.
You mention a lack of knowledge and understanding. What factors are important in raising awareness of these issues?
Disability studies has been really important with this. Disabled people are becoming louder and they are becoming more eager to have personal assistance and they are starting to say what they think—which is a good change—and starting to participate in research. A lot of effort has been put into study and research on independent living, and it has altered disabled people’s lives, their way of thinking and how they feel about themselves. All this is really precious knowledge, which I believe is not used enough.
When I was 18 years old, I went to this conference that was held for people with the same impairment that I have. At that time I was really scared of the future; scared of not getting assistance and scared of what would happen and where I would end up. But I went there and I saw people who were in the same position that I am in, and they had their personal assistants and they were working on studying and had moved away from home, and had gotten married and had children and were just living the same life as all other people. There I realised that if they could, then I should be able to, so that really gave me a lot of strength.
So when I came back home, we started working on getting the direct payments. I think for one and a half years there was nothing—there was no progress—they didn’t listen, they didn’t want to know what I really wanted; they kept telling me there were some great group homes I should look at. No matter how many times I said ‘No, I am not interested, that’s not what I want,’ they kept pushing me. I knew that if I would accept that, I would be sharing assistance with others. Then I would always have to ask other people if it is ok for me to go to the shop, or go to school or wherever. I know people who live this way here in Iceland; some of them sit the whole day sometimes waiting for someone to assist them with such small things that it’s really, really sad. And they don’t get to decide whether they eat dinner at 5 o’clock or 9 o’clock and they don’t decide when they go to the toilet, and they don’t decide when they go shopping. I mean, it’s just not living, it’s just being.
Then I met an advocate who had been assisting a young disabled man who lives independently in his home. So when the advocate came with me to a meeting it was harder for the Regional Office for the Affairs of Disabled People to not give me something that another man had. The advocate just said what he wanted to say and he didn’t care what the Office staff thought of him. And that’s really important. When you have been in this business for many years you start to behave like they want you to behave, really. And you don’t say the things you want to say because you’re afraid that they will get pissed off and give you even worse services. So what I did was just assess my own needs. And that’s how it is today. And I don’t have it 24-7 even though I need it. You always get less than you ask for.
Do people scale back their expectations because of these frustrations?
I feel that this is what is happening to many people now. They wait and wait and people start to give up. You don’t have any energy left to fight for it anymore. You just get so tired, even though you know the importance of it and that your life maybe sucks quite a lot because you don’t have the assistance. People still are just giving up because they make it so difficult. I believe it’s important for disabled people to have the opportunity to know more about their human rights, the social understanding of disability and have peer support in the process of getting direct payments and personal assistance. The demand for independent living must come from disabled people themselves because we are the only ones who know exactly how we want it done, so to accomplish that we need to be aware of our rights and be empowered by each other.
The UN Convention on the Rights of Persons with Disabilities was adopted in December 2006. As described by UN Enable, the Convention is a ‘paradigm shift’ in the attitudes and treatment of disabled people, from “viewing persons with disabilities as ‘objects’ of charity, medical treatment and social protection towards viewing persons with disabilities as ‘subjects’ with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.” Of particular importance regarding the Independent Living Movement is Article 19, subsection a.) which states: “Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.”
The UN Convention on the Rights of Persons with Disabilities
Iceland signed the Convention and its Optional Protocol on March 30, 2007. However, as of May of 2010, Iceland has ratified neither. To ‘sign’ the UN Convention “indicates the intention of a State to take steps to express its consent to be bound by the Convention and/or Optional Protocol at a later date.” Ratification, in contrast, is somewhat more meaningful as it “legally binds a State to implement the Convention and/or Optional Protocol, subject to valid reservations, understandings and declarations.” While signing the Convention is a step forward, signatories are bound to nothing more than ‘intentions.’ Though Iceland does join the ranks of other notable foot-draggers such as the United States— and 59 others signatories—let us aspire to be like the other 85 nations who have ratified. If Vanuatu, Niger, Mali, Jordan, Ecuador, and Bangladesh among others can, what are we waiting for?
For more information about the Convention and its Optional Protocol, consult http://www.un.org/disabilities.
For those of you who prefer your information in a more concise format, try Wikipedia on the Convention on the Rights of Persons With Disabilities