Independent Living for people with disabilities: from patient to citizen to customer

Adolf Ratzka, Independent Living Institute 

CONFERÊNCIA INTERNACIONAL "Vida Independente - a NOSSA vida nas NOSSAS mãos" (Our lives in our hands) 

December 3, 2013  Lisbon, Portugal

Does it make sense to talk about independence in the context of disability? Is not “disability” in most people’s mind synonymous with “dependence”? Dependence on one’s family, on donations from charities, dependence on the medical professions and other experts who tell us how to live our lives? Isn’t it true that disabled people need to be looked after, that we always will depend on other people?

Consider this: in 1961 when I had polio and became disabled in Germany, there were no personal assistance services or accessible apartments. Therefore I had to spend 5 years in a hospital. Today, half a century later, with exactly the same disability I live in a regular one-family house with my wife and daughter in Stockholm.

Before 1973, no wheelchair user in the United States could use public transportation busses. Today, it is almost impossible to find a bus in the US which is not accessible to wheelchair users.

In the US most young people with Downs Syndrome are integrated in regular public schools. In Sweden, pupils with Downs Syndrome attend special schools. Instead of going to the neighborhood school with their non-disabled brothers and sisters they have to spend hours on the bus.

In London all taxi cabs are accessible for wheelchair users by law. In Zurich none of the taxis are accessible and you need to book a ride with the special transport systems several weeks in advance.

Nuria Gomez, who was supposed to be here with us today, was refused by the Portuguese airline TAP permission to board the plane in Barcelona. TAP would not allow the batteries on her electric wheelchair. I also use batteries in my electric wheelchair but in Stockholm I hardly ever have difficulties with the airlines. Most problems I encounter when I travel happen in countries where people like me are typically kept in institutions. When I went to the airport in Bucharest, Romania a couple of years ago, five officials were standing around me not knowing what to do with me, my ventilator and my electric wheelchair because in dictator Ceaucescou’s Romania disabled people were kept in institutions and did not travel.

With these examples I want to show that differences in attitudes and political priorities determine the material conditions of disabled peoples’ life opportunities, determine how dependent or independent we can become. I do not claim that anybody – disabled or not - can be completely independent. As human beings we all are inter-dependent on each other but my point is that persons with the exact same disabilities can have completely different lives depending on where they live. In some countries there are policies and attitudes that allow us to develop our interests, get an education and work, meet friends, marry and have children. In other countries, we may be confined to living in institutions, with little contact with the outside world, with no or only simple work.

We have to ask ourselves: Is disability a medical issue or a question of political priorities? Is it the medical condition that makes you disabled or is it the politics of your country? Most disabled people are not helpless or dependent because of their disabilities, they are made helpless and dependent by their countries’ political priorities and culture of dependency.

Culture of dependency: Medicalization of deviations from the norm

In our society people who deviate from a narrowly defined norm are called sick. If you are a patient, you are to rest, stay at home and follow your doctor’s orders. People have to be considerate to you and do not expect you to work or take on responsibilities. This medical perspective, the medical model of disability, sees the problem and its solutions within the individual, not with society. When I cannot get to the second floor in a building, is it my own fault because I had polio? Or is it the fault of architects, builders and lawmakers who did not think it was important enough that people like me should have equal opportunities?

Culture of dependency: Self-fulfilling prophecies

When people around you expect very little of you, it is difficult to acquire and maintain a healthy self-confidence. Most likely you play it safe and avoid risks and challenges for fear of failing. Without the experience of success and failures, we will not realize our potential, will not grow as persons. Thus, we will confirm society’s prejudice that disabled people are incompetent and helpless.  

Culture of dependency:Lack of freedom of choice and self-determination

Regardless of our individual abilities, needs or preferences as disabled people we are often lumped together into one group. We have to use services that come in one package - the same for everyone. One size fits all. For example, you can see young people with a physical disability living in institutions for old people with dementia. Compared to non-disabled persons we have very few alternatives regarding education, training, work, where we want to live and with whom and what we do in our free time. Most of us have never been able to make important decisions. Other people make them for us. With extremely limited choices and without control over your life you cannot make plans for the future – in fact, you have no future. You go through life feeling like a leaf that is blown around by the wind.  

Breaking the culture of dependency:We are primarily citizens not patients

Independent Living is the name of the international civil rights movement of disabled people. The Independent Living Movement demands the same degree of self-determination, freedom of choice and control over our everyday life that our non-disabled brothers and sisters, friends and neighbors take for granted.

Our movement is not divided by medical diagnoses. Despite different disabilities our common experience of discrimination as disabled people, our analysis of the causes leading to our second-class citizenship and our struggle for social change unite us. Rather than focusing on the medical aspects of disability we concentrate on our empowerment as citizens. We can empower ourselves by realizing that we are the best experts on our needs. We can empower ourselves by developing, testing and promoting solutions to our needs, as a group and individually. This is precisely why we are here today.

Breaking the culture of dependency:De-institutionalisation

People who depend on practical help by other persons for such tasks as dressing, eating or personal hygiene often live with their parents. When the parents are getting too old, their children have to move to institutions. There, they are confined to segregated and restricted lives, far off the mainstream of society, as invisible citizens. One of the Independent Living Movement’s priorities is to liberate our brothers and sisters from institutions by working for community based solutions.

To phase out institutions we need barrier-free housing and personal assistance services in the community. The Swedish building norms from 1978 for residential construction prescribe elevators, entrances without steps, bathrooms and kitchens that are large enough for wheelchair users. As a result, about 15 per cent of Stockholm’s housing stock is now barrier-free. Also, since 1994 people who need every-day help with getting up in the morning, getting dressed and bathed etc. receive a monthly sum from the National Social Insurance Fund. Later I will describe the policy in more detail.

As a result of these two reforms residential institutions only exist in Sweden in the form of so-called group homes where up to 6 persons with a disability and their staff share a house or a large apartment and where each resident has his or her own room.

Breaking the culture of dependency:Cash payments instead of services in kind

In most countries people who are dependent for their survival on the practical assistance by others have very limited choices. If you are lucky you can live with family members who help you with your needs within their limits. If you don’t have such family, you have to move to a residential institution. In institutions there is usually not enough staff to accompany you when you need to leave the building for work or studies in the city, want to go to the movies or for a trip. Thus, persons who need assistance outside the institutions live under house arrest. You may get enough assistance to take a shower, go to the toilet, get food and get help with going to bed. You will survive but you will not have much of a life.

Most countries pay more for keeping someone in an institution than in the community. For example, in Spain (in 2007) the government pays € 2,500 a month to keep a person in an institution and only € 730 to enable this person to live in the community with the help of assistance services. No wonder that so few of us live in the community without having to depend on their families.

The Independent Living Movement works for direct payments where the government sends monthly amounts directly to the individual and not the service provider. In such a solution, users are free to buy services in the market, from the providers of their choice or they employ their assistants themselves. In this way they can custom-design their personal assistance according to their individual needs and preferences. Payments are based on needs in terms of the number of assistance hours one needs and not on who provides the service. Thus, the same amount of money per hour of service is paid regardless of whether the service provider is public or private, for profit or not for profit, or whether the users employ their assistants themselves. Direct payments enable us to live and work anywhere in the country, to live on our own, in apartments or single-family homes, together with friends, and to start families of our own.

Breaking the culture of dependency:Demand-driven instead of supply-driven services

In Sweden, we have had such a system of direct payments since 1994. There is now a market consisting of about 17,000 assistance users, 300 local governments and some 450 competing private service providers. These 17,000 persons together create employment for some 80,000 persons. Of these 80,000 many would otherwise be unemployed. Now they earn, pay taxes and stimulate the domestic demand for goods and services  - an excellent prescription for countries in economic crisis. The market for personal assistance services is driven by the demand from assistance users who have the necessary purchasing power thanks to the direct payments from the government.

Before the reform, users had no choice as to which persons would work for them, when, where,  with what tasks and how. It was a supply driven service, the local government was the only service provider and had a fixed predetermined budget. When your needs increased and you required more assistance hours, any additional hours had to be taken from somebody else. Users had to accept whatever was offered to them. With no competition quality of services was not a criteria. Service users were forced into a passive, powerless role with no responsibilities.

Today, recipients of the payments select providers and negotiate with them to ensure they receive individually adapted services. We have freedom of choice under responsibility. Service providers are eager to compete for us as customers. If not satisfied we can take our business elsewhere. Persons with cognitive or psychiatric disabilities are supported in their consumer role by relatives or friends. Before the reform, assistance users were called “the weakest of the weak”. Today we are customers and employers. It’s been a real revolution!

Breaking the culture of dependency: Democracy instead of oppression

A true democracy does not have first class and second class citizens - all citizens enjoy equal protection and equal opportunities. In a true democracy it is not acceptable to discriminate citizens with disabilities and shut them away in institutions.

A democratic society is based on the principle of citizens’ freedom of choice as voters. In modern democracies this freedom of choice exists not only in political elections but also in the market for goods and services. In most areas of life our society trusts in its citizens’ ability to make decisions in their own best interest. It is time that also disabled people are recognized as experts on their needs especially in such important decisions as to where we want to live, with whom and how.

Let us join forces and work for legislation that would phase out residential institutions and replace them with direct payments for personal assistance. Let us turn our countries into true democracies with equal rights and opportunities for all.

English