HIV-positive, half-paralysed and living off mother's pension

HIV-positive, half-paralysed and living off mother's pension

Former drama teacher Emanuel Cini has difficulty walking up the stairs because of partial paralysis. Photo: Darrin Zammit Lupi

Former drama teacher Emanuel Cini has difficulty walking up the stairs because of partial paralysis. Photo: Darrin Zammit Lupi

"Being HIV positive in Malta is not exactly a tea party. It's pretty horrible," Emanuel Cini, 45, says as he struggles to smile.

He feels he has been ignored by employers, treated rudely by doctors and "annulled" by social services.

Having dual Maltese and British citizenship, he is also in the middle of a tug-of-war for financial assistance and has so far been left without a cent.

Mr Cini contracted HIV in 1992 but managed to live an independent life for decades in the UK and Spain as a drama teacher. However, when he returned to Cospicua last year to take care of his dying father and ageing mother, he contracted toxoplasmosis, a rare disease that left him with a stroke-like condition.

When he underwent a brain scan they found his brain was surrounded by pus and the pressure in the end damaged it. "It has affected my speech and left me with a partial paralysis on the right hand side of my body."

He believes he contracted the parasitic disease because of an abundance of pigeon faeces at his former place of work but has no way of proving it.

Now his father has died and he is living off his 67-year-old mother's pension.

Mr Cini wants to move out and start living an independent life again but to do so he either needs to get government assistance or get a job, which he has found incredibly difficult to do, because of his condition.

Despite his unfortunate circumstances, he has kept his sense of humour and sharpness of mind. He speaks with a gentle politeness as he pets his beloved French bull-dog.

In his view, the worst part of it all is that he is being treated as an extension of his mother. "If they send a letter, they send it in my mother's name, even if they want to speak to me," he says of social services. "It's like I do not exist. It's outrageous. If this is a law it is a terrible law and it must be changed."

He applied for his disability living allowance from London's social services months ago but has been left without a reply.

"When I was living there I used to receive an allowance but I gave it up when my condition improved and I started working. Now I'm almost paralysed I need it again. But since I'm living here I'm finding it extremely difficult to get any confirmation from them. I've already spent €200 on phone calls but there's so much bureaucracy, I haven't received any answers."

He cannot get much from Malta either because he has spent most of his life living abroad. The only thing he qualifies for is an €80 monthly disability allowance for his paralytic state but, since he is living with his mother, he has been told he cannot receive that either.

"They tell me I can only get an allowance if I am living alone. But I can't live alone until I get the allowance or some form of social housing. So I'm stuck here living off my mother's pension."

All he gets from the government is free healthcare but even this is a battle.

"Those working with HIV-positive people are very good in a clinical sense but their manner is very old-fashioned. It reminds me of matrons in the 1950s, the way they walk around with their entourage terrorising everyone they have to treat."

"All I'm doing is fighting my way through being recognised and not talked to as if I'm some kind of idiot who doesn't know anything... to be looked at straight in the face. These are things I think are very important."

He says he wants to work but no one wants to employ him. He believes he was asked to leave his previous job because his colleagues complained. They were afraid his condition was contagious and they were being put at an unnecessary risk.

So what is he asking for?

"I'm asking from Maltese society to realise that being HIV-positive is not really a big deal. To get HIV is very difficult. You have to have sexual contact. You won't walk out of here with HIV just by speaking to me," he says.

He is also asking for the government to give him an empty one-bedroom flat in the Cottonera area so he can lead an independent life and continue with his rehabilitation where he is not a burden to his mother.

"That way maybe I can start being recognised as a person again and have my own address where social services can send letters in my name. Until then, what can I do? I have no money of my own. It's crazy."

The Ministry for Social Policy refused to answer questions about Mr Cini's case saying this went against data protection laws, even though he gave express permission to divulge any details necessary.

See video interview on the mainpage

Comments not loading? We recommend using Google Chrome or Mozilla Firefox with javascript turned on.
Comments powered by Disqus