An Institution Is Not a Home

The right to live in one's own home community: It sounds so basic, yet this right is denied to millions of persons with disabilities who are segregated in institutions. In Europe alone, at least 1.2 million persons with disabilities, among them more than 150,000 children, live secluded in institutions.

In honor of the International Day of Persons with Disabilities, Senada Halilcevic from Croatia opens our eyes to one of the most important rights in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Based on her experience of living in an institution, making her way out of it, and building her life in the outside community, Senada illustrates how an institution cannot be a “home” for anyone.  As a member of the Self Advocacy Association (a grantee of the Open Society Foundations), a steering committee member of the European Platform of Self Advocates, and a board member of Inclusion Europe, Senada advocates for policies that replace the promotion of institutions with support and funding options within the community.

Senada recently addressed UN delegates at the 2010 Conference of States Parties for the Convention on the Rights of Persons with Disabilities. Her speech follows.

Independent Life in the Community

My name is Senada Halilčević. Due to family situation, I have spent the biggest part of my childhood in institutions. I have finished special elementary and high school there. After graduating from high school I returned to my family. I couldn’t find a job, and the situation in my family was becoming more and more difficult. I’ve ended in the institution again.

While I was living in the institution, I observed how people live in the community. I often wondered, why can’t I live like them? Young people in the community socialized, went out, went to school, college, work. I couldn’t do that.

In the institution, I couldn’t decide for myself. The staff decided for me. They often told me: You have a better life than they do. They have to work and you get a cooked meal, clean clothes and, most importantly, you have a roof over your head. You don’t have to worry about a thing. You live like in a hotel.

I wanted to live like all other people.

I started looking for information about the possibility of leaving the institution. After a while, I found out that in Zagreb exists the Association for Promoting Inclusion, which provide supported housing service in the community to people with intellectual disabilities. With the help of my social worker I contacted them and arranged a meeting.

During my first meeting in the association, I knew that was how I wanted to live.

I have been living in the community for three years now. I live alone.  I have a small apartment and a job that I love very much.

When I started living in the community it was difficult. I had to learn a lot of new things. But I could always ask for help. At the beginning I needed more support. Today, I have minimum support for housekeeping activities. I get support from assistants. I decide how much support I need.

I live like all other people. My life has changed. I feel useful because for the first time I contribute to the community in which I live and work. I work in the Association for Self Advocacy in Zagreb. We cooperate with other self-advocates from Croatia and Inclusion Europe. We advocate to all persons with intellectual disabilities become equal members of their societies.

Many people with intellectual disabilities still live in institutions. There, they can’t decide about their life. There, it is believed that employees or guardians know what is best for them. That is not true.

Every person should have the possibility to decide about his/her own life. Every person should decide on his/her own where and with whom he/she is going to live. The UN Convention on the Rights of Persons with Disabilities deals with this issue. Article 19 states that all disabled persons have the right to live in the community as all other people. They have the right to get the support they need for life in the community.

Even though a lot of countries ratified this Convention, the Convention still hasn’t been fully implemented yet. Self-advocates want the UN Convention and particularly Article 19 to be implemented as soon as possible.

My real life began when I was 30. It began the day that I left the institution. All persons with intellectual disabilities living in institutions must also finally get the opportunity to start living their real life.

To read about another leading activist with a disability, please visit yesterday’s post featuring Ola Abualghaib.

3 Comments

Who decide if the institutions are a home????
What my experience is the rules comes from the governements, when the economie turns down they close the institutions for the people who need it.............
We have to be very tolerant what´s individuals and collective decsisions. What´s okej for one person maybe not fit out for the others..........so, is´t the law who have to change to protect individuals. ?????
Tell me your story, Mitzva Maria

You are making an important point. The wrong way to close institutions is to do so solely for the purposes of cutting costs. That is why advocating in parallel for the development of community-based services, to enable persons with disabilities to be included in all aspects of a community’s life, is absolutely essential.

“An institution is not a home.” Think of it in the following basic sense: Societies have decided for themselves on accepted ways of life for their members. In some societies people commonly live with extended families; in others, they live much more on their own. Flat-sharing may be common in one society, and uncommon in another. People live in various settings – rural, agricultural, urban. In no society, though, is an institution considered a home for life for any group of people – except for persons with disabilities. The one exception is prisons, and even there most prisoners eventually leave the prison.

People are entitled to make individual choices. But clearly at this point, persons with disabilities are not given a real choice to live in the community. And more importantly, the right at stake, which we seek to protect, is the right to live like everyone else – in any which way or ways a given society has deemed as the norm.

I admire Senada and would like to get in touch with her because I am disabled myself.

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