Alison Bezzina

Some things are still taboo. Women with special physical needs and their relationships is one of them. We speak about them in hushed voices, and most of the time we do not even recognise their special physical needs, let alone emotional and social ones.

I spoke to three women of different ages, who are all experiencing the hardships of living with severe physical special challenges. By bringing out their stories in the open Ihope to free them, and women like them, from the isolation of thinking that it is their problem or that they are alone. Denying that we are still miles away from successfully catering for people with special needs would be a farce, as would be for them to try to pass as if there was nothing different about them when compared to their peers.

Jeanesse Abela is 32 years old. She was born premature at seven months. Up until she gave birth, her mother did not know that she was carrying twins, and little did she expect to have to wait three months before her daughters could be well enough to be sent home.

But Jeanesse wasn’t well. “At five months my twin sister could sit down but I could not and eventually my parents took me to see some specialists who diagnosed me with Cerebral palsy - Athiod type. This means that I suffer from uncontrollable jerky movements, stiff muscles, and lack of coordination.”

Unfortunately Jeanesse’s mum fell ill and passed away a few years ago. She now lives with her father and younger brother. ‘My mother was the best mum in the world’ says Jeanesse. ‘She used to help me in everything and taught me how to be independent. Dad has been great too. He has done his best to see me happy, and really fights hard for my rights.”

Jeanesse also has difficulty hearing and talking clearly, but she can read lips and type whatever she needs to say. Her witty sharpness is represented by the constant smile on her face.

‘Initially I went to a special school. I started sitting down on my own, crawling and doing basic things. I said my first words when I was 4 and I also learnt the alphabet, numbers and nursery rhymes. Eventually my parents and teachers realised that mentally I was as bright as any other child my age and was taken out of the special school and put into a normal one. I felt accepted straight away there. I loved my classmates and my teachers and I got very good results. I even won a few prizes for effort and took part in school activities like concerts and outings.”

“As I grew up I started facing some problems. At secondary school I got bullied by some of my classmates and some teachers acted like I was invisible and never addressed me or involved me in any way. At one point the van driver also did not want to drive me to my house but my parents fought tooth and limb to get him to do it. When I started going out with friends in the weekend, the main subject of our talks would always be about guys. I realized that it will not be easy for me to experience what they were talking about and it was very painful to accept this. I left school with 7 ‘O’ levels, but I was without friends and felt very lonely and depressed. Then I started to explore the internet, chatting and meeting new friends around the world. I now work as a clerk with a big private company but sometimes colleagues underestimate my potential so they do not trust me with the work that needs to be done. I always insist and prove them wrong.”

“About 7 years ago, I went out with a guy. He was normal like you. I had a nice experience but it ended after 5 weeks. I am single right now and it is very hard to find a guy who can accept me as I am. Some are afraid to talk to me and others just want to be friends. It’s hard to build a relationship.

I’ve travelled to different countries and when I went to Belgium I went wall climbing. In Germany I also went on a bicycle tour along the river Elbe. We cycled for 5km on special bicycles to accommodate our different disabilities. But then four years ago, I had a slip-disc that damaged my spinal cord. I was operated on and after 6 weeks rehabilitation I was told that I will never walk again. I am still recovering but I keep on fighting to get my life back. The saddest thing about this is that had they caught the condition before I might still be able to walk today.

The best two moments of my life up to now were when my sister gave birth to a beautiful boy 3 years ago, and when my favourite team Juventus came to Malta and I met all the players. My hopes for the future is to travel the world, go to concerts overseas and to have my own flat. The cherry on the cake would be to have a family of my own. I wish that people recognize our problems, stop acting like we’re aliens and let us realise our true potential.”

Debbie Scicluna is 40 years old. She was born with a condition called Osteogenesis Imperfecta also known as Brittle Bone Disease. Because of her condition, Debbie is less than four feet tall, her limbs are half the length of a person her age, and is unable to walk. Other than that Debbie is a beautiful woman with an extraordinary will to live.

“When I was born my mother could not cope. My bones would break easily and I was not developing normally. At six months old they took me to Dar tal-Providenza, where I have lived ever since.”

Although she was taken to Dar tal-Providenza, Debbie speaks very highly of her mother, who passed away twelve years ago. “She loved me, but she couldn’t handle me. When she died I realised that no one loves you like your mother. I now live in a small section of Dar tal-Providenza with another four people. The problem is that the other four that live with me are have mental needs not physical. This means that I cannot communicate with either one of them. When I go home after a day’s work and want to distress, I can only close myself up in my own room for some privacy. Sometimes some of them are screaming and shouting and I have no one to talk to. I don’t know why the state does not understand that physical and mental disabilities are different and that you cannot mix the two just like that. ”

Debbie has had four romantic relationships. “I always go out with foreigners and have never dated anyone with special needs. I find that foreigners are more open-minded and care less about what people say about them. My first boyfriend was British and we spent seven years together. He used to visit and I used to go to England to meet him and his family, but then one day he called to tell me that it’s over between us. He finally admitted that his step dad did not approve of our relationship and that he was giving in to him. I was very hurt and felt very used and betrayed. My current boyfriend is a refugee. We’ve been together for a year and a half. We meet every day after work and we talk for hours. I wish we could get married but he’s not sure about it yet. My dream is to be able to leave Dar Tal-Providenza and go live abroad. I would also love to get married and have a child of my own one day.”

“If society treated us like equals we could have a much better standard of living. I have taught myself a lot of things and can do most personal things for myself. I need help with cooking and cleaning but if furniture was adapted to my needs, I wouldn’t need help with those either. The ADT have done a lot to improve the buses situation in Malta and some of them are now accessible, but more needs to be done. The drivers themselves need to be educated and made aware that we are real people.”

“I was once going down Republic Street in Valletta. I was alone, minding my own business, heading for the shops. Suddenly this woman, who saw me coming from afar, pulled her son away from me. I turned round and told her not to be silly because I do not have any contagious diseases that her son could catch. It’s this sort of attitude that really gets to me.”

Debbie works in a government agency as a clerk. She’s been there 13 years and practically runs the office. “My colleagues are very understanding and co-operative. They treat me like one of them because they have come to realise that my disability is nothing to be afraid of and that I am just as capable of carrying out work as everyone else.”

Unfortunately life has left Debbie scarred. “I don’t trust anyone a hundred percent. Everyone can be a back stabber and I don’t feel that I have anyone that I can count on. I depend on myself and myself alone. After my mother passed no one was left to support me. The rest of my family is hardly around and friends come and go, but I still dream of leaving Dar Tal-Providenza and to move into an apartment with someone like Jeanesse. We would need very little external help because with our abilities put together we can cope and help each other out, but there’s a long way to go until that happens.”

Roberta Magri is about to turn 19. She’s an only child and like every other 19 year old she’s in love with fashion, adores her friends and dreams of finding the love of her life sometime in the near future. Roberta lives with her parents and her gorgeous dog – Kelly.

Roberta was born suffering with a condition called Central Core Myopathy which in simple terms means that some of her core muscles are and will remain very weak for the rest of her life. Her motor development was also very slow, and though as a child she could walk by holding on to walls, an eight hour operation to correct her sever scoliosis has now constrained to a wheelchair.

Roberta was referred to me by a mutual friend. I was told she was a fighter and apart from her meek childlike voice, she certainly turned out to be one.

“As a child I used to be very timid and withdrawn. I never reached out to people and it was hard to make friends. I never had a group to belong to, and always felt pretty much alone. Today I feel that my biggest and greatest achievement is to have found a group of really good friends.”

Ironically Roberta found great friends over the internet. “I met them online. At first we were chatting and exchanging emails. Then we decided to meet up so I invited them over and we’ve been friends ever since.” Roberta’s mother vouches to this. “I did not think you could find friends like this over the internet, but thank God, Roberta did. They are great and they come from all walks of life. Some are young like Roberta and some are married and older, but they all get along and take Roberta out with them to places. She’s really happy when they’re around and I’m so happy for her.”

Roberta might not have had what you'd call a full blown romantic relationship but she's been flirting with more than the idea of one. Clearly there was more than she was ready to tell me with her mum in earshot, and her hopes are high for what the romantic future holds in store for her. “The time will come I’m sure it will. I would love to live independently and have a family. I make sure that I keep myself healthy by doing physical therapy. I also like to keep myself looking good. I love buying clothes and make-up and paint my nails all the time. I think it’s very important to feel good by looking the best way I possibly can. I get so frustrated when some shops, even new ones that are just being built, are not accessible for people with special needs. I’ve written to the papers, I’ve complained to the companies, but it’s all very slow to change. People see it as an extra cost, and do not have the respect to give us what is rightfully ours – the right to access wherever we want like everybody else. “

Roberta has published a few letters to make people aware of the situation. The last straw was when she wanted to watch a movie and after having called the cinema to make sure that the theatre was accessible, it turned out that it wasn’t and she was not allowed in.“What was more frustrating was that instead of doing their best to make up for their mistake, they did not make enough effort to accommodate me. My mother saw the theatre and could see that there was a place that I could stay in with my wheelchair, but the guy in charge insisted that I might be a hazard to the other customers. May I add that there were only another three people in the theatre!’

First published on Pink Magazine - August 2009