Right to Visibility - Right to Independence.

Right to Visibility - Right to Independence.
Are we sure this is obvious?

Most people without disabilities take for granted the opportunities they have regarding living conditions, work situation, means of transport, social and recreational activities and other aspects of daily life. Freedom of choice and independence seem indisputable.

But what does this right look like in the lives of people with disabilities? Or are they free to make these all-too-obvious decisions?

For many people with disabilities, barriers in their environment take away or significantly limit their ability to live independently. Some are as trivial as the lack of ramps for wheelchair users, the lack of interpreters or subtitles for the hearing impaired or the lack of copies of materials for the visually impaired.

There are other obstacles, too and in some cases worse ones, in fact. These are the misunderstandings and societal prejudices against disability. Underestimated expectations of the independence potential of disabled people may further hinder their attempts to live independently. It is as if not only the person, but their capabilities, are invisible.

Meanwhile, millions of people with disabilities around the world live independently. They are fulfilled in many roles in their communities, as employers and employees, partners, parents, students, athletes, politicians, taxpayers and more. In most cases, they have achieved success not because of a lack of barriers, but in spite of them.

Independent living is not just about living life on one's own terms, having employment that matches one's interests and abilities or having a social life. Independent living is about self-determination. It is the right and opportunity to follow the path a person chooses, regardless of discrimination or barriers. It also includes the right to make mistakes and learn from them, just as non-disabled people do.

Independence built on the values of community and freedom

The history of the independent living movement has its origins in the philosophy that a person with a disability has exactly the same rights and choices as any other person. The best example of this is the United States - they really can put on a good show of unity! Let's look at a few pages from History:

• In the 1850s, when deaf people in the United States began to set up local organisations to defend their interests, to merge in 1880 into the National Association of the Deaf.
• During the Great Depression of the 1930s, the League of the Handicapped organised protests against the government for discrimination in federal programmes.
• In the early 1940s, the following were formed: The National Federation of the Blind and the American Federation of the Physically Handicapped. Disabled soldiers returning from World War II formed the Paralysed Veterans of America.
• In the 1960s and 1970s, the movement became linked to the civil rights struggle for black people and other social activism. Local groups of people with various disabilities, working together to identify barriers and gaps in community services, played a significant role in these efforts. Advocates for people with disabilities have developed an education plan for communities and influential politicians at all levels to change laws and introduce new regulations that remove barriers.

What you can't see, what needs to be shouted about

Imagine that in 1967, for lack of other options, 12 disabled students studying at the University of Berkeley in California lived in the outpatient clinic of the Student Health Service, part of Cowell Hospital. Only inspired by the activism of the 1960s, they began to see themselves as an oppressed minority, not patients!

The students living in the hospital were united by a sense of community, reinforced by the barriers and discrimination each of them experienced. They began to call themselves the Rolling Quads. Already as a group, they were protesting against the restrictions placed on them by the rehabilitation counsellors. One counsellor whinged that two disabled students were 'unviable', meaning they would not be able to find work after university, and tried to send them away to a care home. Group leader Ed Roberts, along with others, protested and demanded that the counsellor be transferred and that the students be reinstated at the university. It got to the point where a Psychiatrist from the Department of Rehabilitation threatened to lock all members of the Rolling Quads in a Psychiatric facility. When the group publicised their problems in local newspapers, the state of California finally relented, moved the counsellor and reinstated the students.

At the same time, Jean Wirth of the US Department of Health Education and Welfare created a monitoring and support programme for minority students to lower dropout rates. She approached Ed Roberts and Rolling Quads with a proposal to create a similar programme for students with disabilities.

The programme they created was called the Physically Disabled Students Program (PDSP). Included were benefits for personal assistants, wheelchair repairs, lifeguard care and assistance in obtaining benefits available through various state, federal and social rehabilitation programmes.

The three main principles of the PDSP:

• Disability experts are people with disabilities
• The needs of people with disabilities are best met through one comprehensive programme, rather than several smaller ones in different agencies and offices
• People with disabilities should integrate into communities

As the popularity of the programme grew, non-students with disabilities also began to apply. In 1971, PDSP began meeting with residents who needed its services and established the first Centre of Independent Life(Centre of Independent Life (CIL), with an annual grant of $50,000 from the Federal Rehabilitation Services Administration.

The philosophy behind the Centre of Independence Life was that it was not a social service agency, but a non-profit support organisation.

There are currently:

• 403 Centres for Independent Living (CILs)
• 330 Branches
• 56 Independent Living Councils (SILCs)

All Centres for Independent Living are committed to offering:

• Mutual assistance
• Information and consultation
• Individual and systemic support
• Independent living skills training

Be the change you want to see in the world

With this idea, uttered by Mahatma Ghandi, in respect for all the initiatives of the world, in admiration for the enormous amount of work and effort undertaken by people with disabilities, and in amazement that there is still so much to be done - we put ourselves to our work: to make the Invisible visible and live independent lives.