- promoting disabled people’s self-determination

The Independent Living Institute is a policy development center specializing in consumer-driven policies for disabled peoples' self-determination, self-respect and dignity.

We run a virtual library and interactive services for persons with extensive disabilities. We are experts in designing and implementing direct payment schemes for personal assistance services, mainstream taxi and assistive technology. Our projects >>

We are a not-for-profit private foundation run and controlled mainly by persons with disabilities. Our latest Annual Report >>

As ILI is based in Stockholm, Sweden, our website features an online service for reporting inaccessible environments (in Swedish) and a database with information about personal assistance service providers (in Swedish).

International conference to be held in Stockholm to celebrate 25 years of Independent Living in Sweden November 28 and  29, 2008

2008-08-15  Direct Payments, as used in the UK, can make life more difficult for disabled and old people

2008-05-14  Jan-Jan Sabbe, founder of the Belgium Independent Living Movement left us yesterday.
How Adolf Ratzka remembers his friend.

What is Independent Living

Independent Living is a philosophy and a movement of people with disabilities who work for self-determination, equal opportunities and self-respect. 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 be in 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.

We are profoundly ordinary people sharing the same need to feel included, recognized and loved.

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. Adolf Ratzka 2005

Center for Independent Living in Jerusalem

By Daniela Brafman, Director, Center for Independent Living Jerusalem, January 2008

Jerusalem 2000. The cold winter months of 2000 boiled with the turbulent demonstrations by Israel’s disabled population.  What began as a struggle to raise National Insurance pensions went much farther, and helped put the issues of the disabled and social discrimination on the public agenda.  For 70 days and nights the striking disabled, led by the late Mr. Tzudkevich, to inspire a revolution among themselves and to understand that the power to generate change is in their hands.

Memphis,Tennessee some fifteen years earlier.  I had arrived in that city in the state of Tennessee in the USA to study.  In that foreign city the Center for Independent Living was one of the first agencies to welcome me by giving me relevant information, providing me with a replacement wheelchair when mine suddenly broke, and by simply extending a friendly and welcoming hand.                                                                                    
There, for the first time in my life, I could celebrate independence. Equality.  Partnership.
There, for the first time, I could celebrate myself.

The Memphis Center for Independent Living is one of about a thousand such centers operating around the USA.  The founder of the first center, which was established on the University of California at Berkley campus on the 1970s, was Mr. Ed Roberts. Ed Roberts, who at age 13 became paralyzed from the neck down, together with a community of other students with assorted disabilities, began to develop advocacy strategies of their own for the handicapped who lived nearby and who experienced a host of problems in maximizing their independence and integrating into society.

• Their motto was, “Nothing about us without us.”
• Labels belong on bottles – not on people.
• People with disabilities are the only minority group that anyone could join at a moment’s notice.

The Independent Living philophy claims

• People with disabilities constitute a minority that is subjected to social oppression, deprived of their rights and discriminated against.
• In order to change this, they must organize and support one another.
• Only people with disabilities know what their needs are and how they should be addressed.

It is only natural that with this inspiration, a group working toward equal rights for people with disabilities would take root in Jerusalem immediately following the demonstrations by the disabled which, starting in 2000, called itself “Disabled Now – The Movement for the Rights of People with Disabilities.” Private homes, coffee houses and youth movement centers became temporary action centers for the Disabled Now association.

Independent Living as an ideology, as a way of life,  a philosophy is a very new idea in Israel. It is quite a challenge to work for Independent living here. The Israeli society is a militaristic one. You better be strong healthy and beautiful etc.  This has different implications on how people with disabilities are observed. There are slow changes here (for example the law for accessibility was just passed one year ago), but on the level of the 'street' there is a lot to do.

Our work was and still is organized on three levels:

Activity for social change on issues found in the field, for example:  Accessibility on the street and public transportation, employment through personal assistance, participation in the legislative process, and more.  Friends of the Disabled Now association probably remember the street theater event held in Jerusalem under the slogan, “It’s simply about accessibility.”

Public relations activity that has appealed, and continues to appeal, to agencies, organizations, institutes and private individuals, and is aimed at changing the social image of the disabled and recruiting other people with disabilities as active members in the organization.

Internal educational forums on rights and how to maximize them, personal empowerment and enhancing knowledge about the history of the struggle by the disabled throughout the world. 

At that point in time, there was a real desire to establish a Center for Independent Living in Jerusalem.  The idea was studied at internal meetings and countless discussions were held to identify the needs that had to be addressed.  Plans were written for various projects. At the same time – we held conferences with disabled people and organizations in the community, with professionals and family members of people with disabilities. We established contacts with major bodies and financing agencies within the establishment. A steering committee, began meeting on a regular basis in order to closely monitor the establishment of the first independent living center in Israel. This was a celebration of practical and conceptual collaboration on behalf of this pioneering idea and initiative.

The official birth of the Jerusalem Center for Independent Living took place in 2003.  At that time we entered our small cubicle of an office at 43 Emek Refaim Street.  For three years in this melting pot, in this laboratory, we experimented, made mistakes, and learned from our errors.  Activists, friends and loved ones worked, toiled, monitored from close and from a distance to watch the growth in Jerusalem of a body, a community of people with various disabilities who were seeking to show that the disabled were also capable of establishing and developing the services they themselves needed.  That the disabled could run such services and influence the official bodies providing these services.

We worked out of this “submarine” and our dream of moving into a larger physical space came true after four years.  At the end of April 2007, the Independent Living Center opened. We now have a home for our activities and services such as Peer Counseling, courses and training workshops for people with disabilities, meetings for Committees for Social Change in various areas including Accessibility, Employment, Community Awareness, Foreign Aid as well as occasional social activities.

Our center is more than a physical place, it is a spiritual space and an existential state. We are turning its walls and the ceiling into an extension of our own character.  Decisions concerning how to furnish the house, what pictures to hang and how it should be run must reflect ourselves, our personality, our goals and intentions. 

We are building a proud community of people with a variety of disabilities who are working to generate a change in Israeli society in how it relates to disability, through action teams on different issues, and by developing services and leisure activities. Only by recruiting individuals will this community be able to build itself and make a difference.  Only by interweaving ourselves into the surrounding environment and through openness can this place serve as a center for initiative and social change. The knowledge and experience we have gained thus far will be made available to organizations and groups who identify with these objectives and who also wish to establish independent living centers in other locations.

In conclusion, the words of Adolf Ratzka: 

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.

Trials and tribulation of persons with disabilities in 2007 general election

By Phitalis Were Masakhwe, 28 January 2008  

If you think winning a seat in Parliament is difficult for your average Kenyan, ask those with disabilities about their experiences.  The recent elections failed to send any disabled people to the Parliamentary benches, leaving a community of three million disabled Kenyans unrepresented.

The consequence of this for the lives of disabled people in Kenya is catastrophic.  Who will stand up in Parliament and argue for the rights of disabled people?  Who will demonstrate that disabled people are not pariahs, but are strong individuals who make a valuable contribution to Kenyan society?  For the next five years, at least, it seems nobody will.

The real shame is that it didn’t have to be this way.  Disabled people were involved at all levels within all political parties in the pre-election campaigns.  I myself stood in Mumias, but unfortunately like my colleagues Ms Salome Kimatta in Gatundu South, Sammy Leshore in Samburu East and Dag Kimani in Lari was unsuccessful.  Others stood for councillorship in constituencies across Kenya, spending time and money to convince Kenyans to elect somebody who would really represent the person on the street, but achieved similar results.

Why, if there were so many disabled people involved at all levels of the campaigns, were none successfully elected/nominated to become Members of Parliament?  This is an important question, because if we are to change things for the future we must understand the failures of our campaigns during the past election.  We can not afford to let three million people go totally unrepresented in Kenyan politics.

From my personal campaign experiences and discussing the issue with my politically-active, disabled friends I have recognized various factors that hinder disabled people partaking in politics.  Many of these stem, I believe, from Kenya’s current level of democratic and development maturity.

The principal problem, to be frank, is that the political landscape is hostile to those with disabilities.  It does little to encourage disabled people to partake in politics.  There are no systems in place for example, such as affirmative action in the current constitution, which would actively increase the representation of minority groups, including the disabled, in politics.

This isn’t an international or even a regional position though.  Uganda, for example, has special constitutional mechanisms for ensuring minority groups are represented in local and national politics.  As a result there are five MPs and over 40,000 councilors with disabilities in Uganda.  This begs to the question why can’t Kenya take a similar approach towards its own disabled community?
 
The resource factor is another thorny issue! The financial costs, for example, to stand as a candidate are exuberant and are beyond the capacity of many disabled people who traditionally earn proportionally less than their non-disabled counterparts.

Candidates need millions of Kenyan Shillings at their disposal to finance the campaigns.  Money that must be automatically available as soon as a person declares their intention to be the constituency’s next Mheshimiwa/honourable.

Parliamentary campaigns consume money at a vast rate.  Mobilisation and logistical costs add up, whilst money must be directed towards local development projects.  Travel costs, including the cost of renting or buying a car that can handle the inaccessible terrain in many rural parts of the country, add up fast. 

Security is another high cost.  For disabled candidates, especially, safety and security is a key priority, particularly in areas unknown to the campaign team or in opposition strongholds.  Candidates must move around carefully, which may even mean hiring a team of security agents and an extra car, just in case.  These requirements can lead to the rocketing of campaign costs.  For many disabled people on low incomes and limited resources the financial demands put lay to their plans to stand for Parliament or ward level.

Yet, money is just one in a long list of problems for disabled candidates.  The stigma of disability that affects disabled people during their everyday lives again comes into play during the political campaigns.  A lack of understanding and negative attitudes towards disabled people means that candidates must battle with the presumption by voters that they are not up to the job.

This attitude is not helped by non-disabled candidates encouraging the idea of disabled people as lesser-class citizens.  This crude and primitive behaviour does nothing to flatter the candidates in my opinion, but unfortunately it does often have an adverse affect on the campaigns of disabled people.

Many constituents buy the idea that disabled people cannot make effective and successful politicians as the low level of education and general disregard of disabled people throughout Kenya means they often know no better.  Disabled candidates face an uphill battle to change these viewpoints and to gain the trust and confidence of their voters.  Something their opponents do not.

The 2007 elections also saw candidates struggle to physically present their nominations to the Electoral Commission of Kenya (ECK).  The ECK Chair, Samuel Kivuitu’s announcement that the “ECK [would] receive nomination papers on first-come-first-served basis” meant that there were often physical battles for candidates to present their papers.  In the ensuing chaos and violence how many disabled candidates were actually able to get to the Commission?

The media, NGOs and development partners also have a role to play in encouraging the presence of disabled people in politics, something which they all failed to do during the elections just passed.  There has been widespread coverage of female candidates and the dispute over the Presidential election, but reports on disabled people in the political system have been non-existent. These groups need to pick up the disability flag and start campaigning for the inclusion of disabled people in politics, as they have an important role to play in changing people’s attitudes.
 
Another major blow for Kenya’s disabled people has been the failure of all the political parties to nominate disabled person to Parliament under the twelve slots constitutionally reserved for special interest groups.  The failure must be attributed to Kenya’s political parties first of all, yet the ECK also played an important part by not clearly explaining what is meant by the term ‘special interest groups.’

Past legal decisions have confirmed that disabled people should be represented in Parliament as a minority group, and that the ECK has a responsibility to ensure this happens. According to a judgment delivered in 2006 in a case filed by the Ilchamus,a minority group from the Rift Valley, the judges, ruled that:

“No doubt each age will have its fair share of minorities and special interest groups but in our time they include the blind, the deaf, the physically disabled and the youth… We hold that the ECK has a responsibility of identifying all categories and to ensure that the lists reach the political parties and other organs with the power to appoint under section 33 of the constitution of Kenya.”

The same judges said that, “for a political system to be truly democratic, it has to allow minorities a voice of their own, to articulate their distinct concerns and seek redress and thereby lay a sure base for deliberative democracy. Only then would a state or nation such as ours, truly claim to have passed the democratic audit test.”  The failure to secure representation of disabled people as Parliament demonstrates is yet another example of Kenya’s immaturity with regard to democracy.
 
Disabled people are not sitting back though.  The disability community has launched various advocacy and media campaigns to get the ECK and political parties to hear and respond to our case.

The fight has also been taken to the courts.  Unfortunately the conservative and non-reformist judges who occupy the benches of the Kenyan legal power may fail to rule that disabled people should be awarded a seat in Parliament as a special interest group.  A decision, which as far as I can see, will wholly contradict the Ichamus decision.

Our campaign, therefore, continues.  The disability community is currently working on a constitutional reference case aimed at rendering the nominations of the twelve MPs under the special interest group places null and void.  We will not stop until we have achieved representation for disabled people as is their right under the constitution and the new UN treaty on disability rights.  We cannot afford to.

The recent elections have been eye-opening in many respects.  Yet one of the least recognized results has been the plight of disabled people.  The failures of the political system, political parties and the ECK have left over three million people unrepresented.  Disabled people will continue to fight for our basic rights; we ask you to join our campaign.  This is a battle that we cannot afford to lose, not only for the sake of disabled people but for the sake of Kenya’s democracy and development.

The writer, a sociologist has a physical disability. He is a senior Resource Development Advocacy and Campaigns Manager with Leonard Cheshire Disability LCD, East & North Africa Regional Office based in Nairobi. He has worked and lived in Afghanistan and Sudan. He was a parliamentary candidate for Mumias in the 2007 general elections. He can be reached on Phitalis@lci-enar.org  or mphitalis@yahoo.com