What role can Independent Living play in a country in economic crisis?

Sweden.
The Academic Network of European Disability experts (ANED) has current data (2014) about personal assistance and IL in Sweden.

The European Network on Independent Living (ENIL) has a European survey on personal assistance with current data (2013) about personal assistance and IL in Sweden.

Plenary presentation at conference
“Politics for Disability, Disability for Politics”,
 organized by SYRIZA party and Institute
“Nikos Poulantzas”, Athens, March 13, 2015

Adolf Ratzka, PhD
Director, Independent Living Institute, Sweden

What is Independent Living

Independent Living is a philosophy and a movement of people with disabilities who work for self-respect, self-determination and equal opportunities. Independent Living does not mean that we want to do everything by ourselves and do not need anybody or that we want to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, work in jobs that are in line with our education and interests, and start families of our own. Since we are the best experts on our needs, we need to show the solutions we want, need to take charge of our lives, think and speak for ourselves - just as everybody else.  To this end we must support and learn from each other, organize ourselves and work for political changes that lead to the legal protection of our human and civil rights.                                             

As long as we regard our disabilities as tragedies, we will be pitied.
As long as we feel ashamed of who we are, our lives will be regarded as useless.
As long as we remain silent, we will be told by others what to do.    (Ratzka 2003)


If Independent Living is the goal, how do we get there?

Anybody can become disabled, therefore people with disabilities are like anybody else: we have the same needs to be included, to be recognized for who we are, to be respected and loved. We are profoundly ordinary people. As profoundly ordinary people

We demand our rights - not charity

We are not beggars. We claim our rights as human beings and citizens. Greece and the other European Union countries have ratified the UN Convention on the Rights of Persons with Disabilities. The Convention consists of a number of rights, for example, the right to accessible environments, to education, healthcare, the right to live with our families in the community rather than institutions, etc.  Now we demand that our governments, in Greece and elsewhere, meet their obligations as specified in the Convention. Do you know whether your MPs and the ministers of the new government have heard of the Convention?

As profoundly ordinary people we demand inclusion

We need to live in the middle of society, not at its periphery. We are part of this society and must be heard and seen everywhere - in the streets, schools, shops, workplaces, in the board rooms of big business and in Parliament.

As profoundly ordinary people we demand equal opportunities

Just like other human beings we have an innate potential which we need to develop and realize in order to contribute to society. We need to have the same opportunities to contribute to family, neighborhood and society that other citizens take for granted.

As profoundly ordinary people we demand the dignity of self-determination

We have aspirations, priorities and dreams just like everybody else. We are the best experts on our needs and wishes. We must make the decisions that impact our lives, the small decisions and the big ones. We, not somebody who works for the local government or a charity. To make decisions, we need acceptable alternatives to choose from. For example, we too want to live with our families when we are small.  But as young adults we want to move out, live by ourselves or move in together with friends, live in the city or move to the countryside. When our non-disabled brothers and sisters, friends and neighbors have these options, so must we.

I have an extensive disability. When I was 17 years old, I had polio and since then I use an electric wheelchair for mobility and a ventilator for breathing. I need help from other people for getting up in the morning, to wash myself, go to the toilet and for many other daily activities. How do people with such needs live in Greece? Do they live with their families when they are young? Do they still live with mom and dad when they are adults? Do mom and dad need to help their disabled 40 year old children go to the toilet? And what happens when mom and dad are in their 80s and need lots of help themselves?

Perhaps there are residential institutions in Greece where they feed us and help us to the toilet. But is that what life is all about? In some countries politicians and government officials praise the high quality of their country’s residential institutions. So why don’t they live there themselves, if these places have so much to offer? I lived in an institution between the age of 17 and 22. 5 years. I couldn’t leave the buildings because I had nobody to come along and help me. The whole day, the whole week was planned and determined by the staff: when to go up and when to go to bed, when to eat and when to go to the toilet. I had to accept help with the most intimate things from the whole staff, even from those who didn’t treat me well. I survived but didn’t have a life. I have never been so depressed.

Today I still have the same disability but I am another person: I have regained control over my life. I decide what to do with my time, when to get up, when to go to bed. I am married and we have an adult daughter. But my wife and my daughter have their own lives with work, friends and travel. I’m not dependent on their help except in emergencies. When we go out or travel together it is because we want to. Not because I have nobody else who can come along to help me. I have my work, my friends. I can do things without my family and plan my time because I have personal assistance.

What is Personal Assistance

Personal Assistance  

  • enables the user to decide who is to work, with which tasks, where, when and how
  • is not tied to any particular form of housing or location
  • is not limited to a particular category of persons who can work as assistants
  • pays market wages to assistants
  • recipients are fully accountable for how payments are used
  • all costs including provider’s administration are covered

Personal assistance is made possible because assistance users are legally entitled to monthly payments, so-called direct payments, from the government. With that money we can contract companies to provide the services or we ourselves can employ our assistants directly. We have the choice. 

Since the money follows the user and not the service provider, payments for personal assistance make us customers on a market. In Sweden, we can pick and choose among almost one thousand private and public service providers that compete for customers with each other on the basis of service quality. Organizations that offer poor quality quickly disappear. We can also employ assistants directly ourselves which is the best way to improve the quality of one’s assistance services.

Since the money follows the user and not the service provider, we are free to move to another apartment or another house in the same city or in another part of the country and hire personal assistants there. We can also travel abroad with our personal assistants.

Since the money follows the user and not the service provider, our position has changed dramatically. Before, in Sweden, we were objects in the hierarchically structured local government services. We could complain over poor services, but we had no say and could not change anything. Today, we have the money, we are the bosses. We depend on the services of our assistants, but they depend on us for their employment.  

Obviously, persons with cognitive and psychiatric disabilities might need compensatory help from others, for example, relatives, guardians or other trusted persons, in making the relevant decisions and in monitoring service quality.

In Sweden, an important outcome of direct payments for Personal Assistance services has been their impact on the Swedish national economy. With the help of personal assistants a number of assistance users themselves are able to work – currently 16% of all direct payments recipients.  Another 24% could work, if they had more assistance hours. To these numbers we can add the family members who are free to return to their ordinary work because they do not need to help us anymore.

Presently, some 16,000 persons receive direct payments for Personal Assistance services. This group together employs some 50,000 personal assistants (on a full-time equivalent basis). The City of Stockholm, the nation’s largest employer, employs the same number. Thus, assistance users collectively constitute one of the largest employers of the country making direct payments for Personal Assistance an important labor market policy instrument  -  an inexpensive one at that, since over 50% of the direct payments which Personal Assistance users receive go straight back to the state in the form of social security contributions, income taxes and VAT taxes. Our assistants – often immigrants and young people in transition between school and working life, free-lancers and part-time workers – would often have to rely on social welfare, if they did not work for us. Their wages go mainly to basic consumption thereby stimulating the domestic demand - precisely what countries in economic crisis need.

For many persons with disabilities Personal Assistance is the key to Independent Living. In Sweden and elsewhere Personal Assistance has been a revolution for us and our families. With Personal Assistance we are closer to the goal of equal opportunities, we can take our rightful place in family, be productive members of the community - we can start to live instead of barely survive..

I hope the new Greek government appreciates the role that Independent Living and Personal Assistance can play in the reconstruction of the country’s disability policy and in strengthening the country’s economy. Now, when you start from almost zero, is a good opportunity to build something new and better.

I wish you success in this exciting challenge. 

English