Maleck Haj Moussa likes to do what other 12-year-olds like to do: meet other children, go to the cinema and study science and English at a mainstream school.
But the boy is not always spoken to when he goes out, his choice of movies is limited to two cinema screens in the whole of Malta, and if the lift at his school stops working, he is not able to return home when his classmates do.
Maleck was born with cerebral palsy and uses a wheelchair. In a world built for people without disabilities, simple errands are an everyday struggle – but he is making sure that he voices his concern.
He spoke to this newspaper after his “most exciting night”… second only to his meeting with Pope Francis.
For the first time in his life, Maleck this month had the opportunity to speak out instead of having someone else speak on his behalf. He was one of the participants in the President’s Foundation for the Wellbeing of Society at a debate about the participation rights of children with a disability.
“Addressing such a large audience was nerve-wracking and exciting at the same time, as I finally had the opportunity to represent children with different needs,” said the bubbly 12-year-old.
Asked whether he had ever had the opportunity to represent other children with disabilities, his answer was a straightforward no.
Maleck does not shy away from telling it as he sees it, but he knows that other children with a disability might find it more difficult to express themselves.
This is why he wants to be their voice.
He is aware that some disabilities might limit a person’s verbal communication, but this does not justify excluding them from social activities, he insists.
When asked about any frustrating day-to-day experiences, Maleck laughs and lists a series of issues he encounters, ranging from the physical environment to the behaviour of those around him.
Narrow and unsteady paths, wide and smooth pavements without a ramp, the abuse of the blue badge and the lack of consultation when it comes to road infrastructure are only a few.
While there has been some improvement over the past few years, some things are specifically built for people with a disability without taking into consideration their limits.
One such example is the recent installation of chair lifts at some beaches. When Maleck tried them out for the first time, he needed the help of two people to hoist him into the chair.
Meanwhile, supposedly accessible bathrooms, even at hospitals, are not accessible to wheelchair users: rather than opening inwards or outwards, doors should slide open.
There are also no hoists to lift children like Maleck onto a changing table, his mother Lucienne explains, as she points at the electricity plugs installed all around her house at a level that can be reached by wheelchair users.
“These are little things that discourage us from actually going out – only the other day, we went to Sliema and ended up in Valletta, because we could not find a place to park.”
I finally had the opportunity to represent children with different needs
When he wants to go to the cinema, Maleck is limited to two screens at one cinema in Malta, and he has to book a seat at least a day before.
Sometimes, shops have accessible front doors but are not accessible indoors, as the items are stacked too close to each other, and the path is not wide enough for a wheelchair user.
Maleck is quite independent: he has been camping and trekking, he browses the internet with the help of a special keyboard and finds his way around the house in his electric wheelchair.
But a simple errand at the local grocery shop can easily be cut short because of an unsteady pavement – which is what happened when he once fell from his chair and hit his head.
And although there is a lift installed at his school, he was once stuck on the sixth floor when it stopped working and he had to wait an extra hour after his classmates had gone home.
When Maleck asked what would happen in case of a fire emergency, he realised there was no plan for his evacuation.
The solution, for Maleck, is simply to ask for the opinions of people with a disability or their relatives if they cannot express themselves verbally.
But some people still need to work on their attitude.
He recently went to a restaurant where the only vacant table was in the middle of the room. A waiter told him, in a loud voice, not to occupy the table, as he would be blocking the way for the other patrons.
But something that really frustrates Maleck is that instead of addressing him, even if they are simply offering him a sweet, people address his mother.
“I tell them: ‘How do I know if he feels like a sweet or not? Ask him’. And don’t even get me started on the loose use of miskin and jaħasra,” his mum says.
“We have come a long way, but my dream is that when I’m no longer around, he can continue living on his own and continue his studies. As things stand, there is a lot more to do,” she adds.
‘Don’t leave it to chance: Be aware and listen to them’
Opportunities for children to participate in society are always up to adults, and if they have some disability, their chances shrink even more, according to a new publication.
In their book The Disabled Child’s Participation Rights, lecturers Ruth Farrugia and Anne-Marie Callus note that where disabled children are afforded participation rights, it is always within structures that have been pre-determined by adults.
Dr Farrugia is the director general of the President’s Foundation for the Wellbeing of Society and a senior lecturer at the University of Malta, while Dr Callus is a lecturer at the Faculty for Social Wellbeing.
According to the Convention on the Rights of People with Disabilities, adults should ensure that the views of children with disabilities are heard and that these views are given due weight.
However, control is still in the hands of adults, as they decide what is ‘due weight’, and it is adults who very often have the authority to decide what is in the best interest of the child.
Meanwhile, disabled children’s opportunities for participation also depend on the adults’ perceptions of their ability to engage.
Adults who are reluctant to include children generally in decision-making pro-cesses seem to be even more apprehensive about including disabled children, the authors note.
The fact that there are settings in which the voices of children with a disability are actively listened to shows that there are adults who believe in their ability to take part in decision making. Sadly, opportunities for them to exercise their participation rights are an exception rather than the rule.
The authors have also commented on the tendency to perceive children with disabilities in terms of their lack of functional abilities.
“These children therefore may be seen as doubly incapable of taking decisions or even of taking part in the decision-making process.”
It was therefore vital to ensure that adults who worked with disabled children were aware of their capacity and had the necessary skills to enable these children to do so effectively.
“The realisation of the disabled child’s participation rights cannot be left to chance encounters with adults who happen to be open to it and have the competence to bring it about.”