On the International Day for Persons with Disabilities, Leonard Callus met Joe Camilleri, the former president of the National Commission Persons with Disability, who calls for full inclusion in mainstream society.

I understand that your involvement in the disability sector is sort of a late vocation.

Yes and no. During my adolescence, disability was absent from the public debate. Disabled people were invisible. My physical differences were not noticeable during my childhood. I was lucky to have a radically different upbringing because of which I did not consider myself to be a disabled person.

In what way?

When I was five, our family left Malta to enable me to undergo experimental treatment in the UK for juvenile rheumatoid arthritis. Between the ages of three and five I was almost continuously sedated because of my pain but, now, for the first time I was truly conscious of my surroundings. The year in hospital was spent interacting with other children, in a hospital that looked like a Jane Austen estate.

My doctor told my parents I was wholly normal, except in mobility, so they should treat me like the other children and let me do all that I believed I could do while investing heavily in my education. Back in Malta, my parents strove to put this into practice

Were there problems at school?

The local authorities would not accept me in a regular school because I was considered “too handicapped”. Thankfully, my parents stood up to them. I was accepted at Stella Maris College, although some parents threatened to withdraw their children, objecting to my being in class with them. A year later, I spent 15 months in a UK hospital. We returned in 1962, when I was 10.

And then?

I started school again. When I entered the university, people thought it was a front, not to admit that I was idle, receiving a disability pension. Following my graduation in 1976, I applied to follow a teacher training course. This time, even some lecturers would not believe I could benefit from the course.

How did you feel?

Angry! I knew what I could do and what I couldn’t. My parents allowed me to discover my limits, rather than let someone else impose them on me. Obviously, there were some misgivings when I started dating, driving and, later, when I planned to marry.

I understand parents’ fears when disabled children want to lead independent lives. I only criticise their actions if they try to stop their children from fulfilling their desires.

Disabled people are the only minority group that experiences structural discrimination

How did you get involved in the sector?

After graduation I wanted to give something back. I contacted disability NGOs. However, the whole scene was still focused on impairment rather than social issues.

What do you mean?

Disabled people distinguish between our biological or medical experiences and our social ones. The former is the impairment. I, for one, have a serious mobility impairment. However, I also experience many social disadvantages that lead to my disability: low expectations, exclusion from different venues, lack of opportunities and so on.

Do you still face such problems?

Oh yes. In fact, I am worried that the focus on impairment is increasing. Rather than focusing on social change and ensuring more effective rights for disabled persons, the media is increasingly portraying us as either victims or heroes. Reporting on people overcoming an individual challenge is all very well to my self-esteem, but being a disability activist benefits everyone, not just the individual.

Disability Week was always an opportunity to stimulate a debate on disability issues. It’s disappointing to note that that the main initiative being organised by one of Malta’s foremost disability NGOs on the International Day for Persons with Disabilities is a major fundraising activity. It brings memories of patronage, of charity and disabled people as passive recipients of handouts.

The event should be an occasion when we raise issues, not raise funds.

What happened after your graduation?

I tried to work with some disability NGOs but discovered the sector was alien to me. Disabled people were considered objects of mercy and pity. Non-disabled people mainly listened to me politely but ignored my advice. I just went away to get on with my own life.

What made you come back?

I returned because of the changes ushered in by the National Commission Persons with Disability, set up in 1987. This commission had a radically different approach and I could identify myself with its focus on social change and rights-based language.

You were one of those involved in preparing the Equal Opportunities Act. Was it useful?

Very useful. We were beggars no more: unequal treatment became illegal. The power structure changed. We started participating in decisions that impacted directly on us. For example, we chaired Mepa’s Test of Reasonableness Board to ensure that all new public buildings were accessible, often being unjustly accused of hindering investment.

Parliament is debating changes to the law. What are your views?

I have no problem with the commission’s separation of the regulatory framework from services provision; this is a good idea. However, I would wish more consultation, also with disabled people, who are more analytical and critical of government plans and policies.

The greatest issue is the commission’s autonomy. This has always been a problem. In 2000, we did not have the experience we have now, and placing it under a ministry has been a mistake. We were fortunate to report mainly to Lawrence Gonzi, who gave us absolute freedom, even when we would criticise government decisions.

The commission’s structure has to be wholly autonomous and independent of the Executive. The Civil Liberties Minister’s statement about the planned human rights commission to cater also for disabled people’s rights worries me. There was an attempt when the National Commission for the Promotion of Equality was set up. We resisted it.

Why?

Disabled people are the only minority group that experiences structural discrimination. We are the only group that can be excluded merely because access to the environment, to means of communication or information, are denied. It goes beyond a conscious discriminatory policy. Experience overseas confirms my fears. The UK Equality and Human Rights Commission led to the loss of the gains registered by the Disability Rights Commission it replaced.

What are you aspirations for the future?

We must avoid centralisation. I don’t agree with huge premises where there is a concentration of disabled persons, not only residential services. It also applies to employment and other services.

Any disabled person who is forced to leave his community, neighbourhood and family to receive a service or to be housed in the disability hub is being stripped of his circle of intimacy and participation and pushed to depend completely on formal services.

I wish to see an increase in the non-contributory disability pension for a small group of people who will really never be able to get into full-time employment.

I recommend that the good scheme mentioned in the Budget, subsidising the elderly-care-workers’ wage, be extended to cover disabled people.

More than anything, I want to see us maintain our move towards full inclusion in the mainstream of our society.