'Label jars... not people'

Marika Azzopardi interviews Andrew Lee, director of a British organisation run by intellectually disabled people, who spoke about the vital role of education in breaking down myths and misconceptions.

Self-advocacy may not mean much to many people. However, it is fast becoming the keyword for people with intellectual difficulties. Self-advocacy encourages people to speak out and express themselves - a step forward to being understood and better supported in today's evolving world.

I recently saw the efforts of intellectually disabled persons when members of the Speak Out group took part in a special parliamentary session in order to voice their rights and requests.

Another example was a seminar with the title Self-Advocacy for Persons with Intellectual Disability held recently. The keynote speaker, invited specifically by the National Commission Persons with Disability, was Andrew Lee, director of a British organisation called People First. I met up with him to further understand the concept behind his work.

People First was set up in 1984 with the purpose of increasing awareness and teaching people how to see the person before the disability. This charity is totally run by intellectually disabled people, helped by special support staff. The latter can give advice on vital matters but cannot make final decisions.

"A motto we chose for a successful campaign back in the early 1980s was 'Label jars... not people.' We wanted to open up people's eyes," said Mr Lee, who was accompanied by a support staff member during the interview.

Up to a few decades ago, the person with an intellectual disability was completely emarginated and labelled with words like "retarded", "mentally handicapped" and "subnormal". But the learning difficulty spectrum is very wide. The most extreme cases can be completely non-verbal but most learning difficulties are not visible and so slight as to be very difficult to pinpoint or even recognise.

"We are all people with varied abilities, but gross discrimination against the most obvious disabilities started creating waves in the 1960s when a whole movement revolted against a disrespectful and disempowering society. With the advance of this movement even groups which worked to help the disabled were thrown into the spotlight, and some even had to change their name into one which was non-discriminatory.

"One of our main purposes at People First has been to kill myths and misconceptions. Even children develop bad assumptions generally obtained from their own parents' negative views."

Through experience, Mr Lee knows full well that, overall, education campaigns must be done with teachers - there is a very real flaw in the way teachers are taught about this sector in the first place, he held.

"People responsible for training teachers need to have a working agreement with organisations such as ours. They need to be able to give them training that teachers can fall back on when they come up against real classroom cases.

"I can mention a case in point as regards specific training, which came up through a 2004 campaign carried out in London. Through a one-day event focusing on bullying, we discovered that the average police officer only received some 20 minutes of training on disabilities. The direct result of this led to gross misconceptions and to the fact that most people with learning difficulties were too scared to even go to a police station to report bullying incidents, for fear of being misunderstood and not being believed.

Eventually police in Croydon linked up with members from People First and now police officers are receiving two-day training sessions specifically about people with learning difficulties."

Mr Lee explained how through this experience further work has been done to empower such people by helping them understand when they should go to a police officer; which other support services are available and how to access them; and how to report a crime. On the other hand, police officers are instructed on how to ask questions and how to give clear responses which can be easily understood.

The media also has a narrow perception of the intellectually disabled. Mr Lee mentioned an incident where the picture of a person with Down's syndrome was used as part of coverage for a TV programme about people with intellectual difficulties.

"They simply had no clue! For them Down's syndrome was the one and only symptom of intellectual disability and they simply refused to even try to understand otherwise. This is very sad and indicates what a hard battle we are fighting. Even Down's varies from one case to another.

"Once we're tackling the media, it is worthwhile noting that the BBC only recently started using disabled actors for disabled roles. Before, such roles were given to able-bodied actors who interpreted the roles of disabled persons."

Finally it is all about the categories which people use to label other people, categories which limit understanding and opportunities, even in the employment field. It is all very well to talk about equal opportunities but unless prospective employers understand what intellectual disability is all about, it is hardly likely that job openings will be directed towards them.

Even well-meaning parents can impede the advancement of their very own children. Mr Lee admitted that parents can only provide a very selective view, even while representing their children and having their well-being at heart.

"Parents' views are important but not always correct. There is a very high probability that what is being provided is not what people with learning difficulties actually want."

He refers to voting rights. "Do people like us have the right to vote in Malta? If they do, do they know how to vote? If not, they do not actually have a voice after all."

It is ultimately all about educating people to understand each other better. People with learning difficulties need to be understood better and "Mr and Mrs General Public", as Mr Lee calls society in general, needs to be helped widen its views.

"We have a campaign called 2020 which aims to see all people with intellectual disabilities being educated in the same schools and according to the same curriculum as other 'normal' children. We would like to achieve this by the year 2020. It is all about education. The more this is available, the better it will be for all."