This article was first published in Pink Magazine – March 2011

Rita (38) and Kevin (32) have been happily married for six years. They met each other when they were still in their twenties, and until they announced their wedding date no one knew that they were romantically involved. “Keeping our relationship a secret was not as hard as it sounds,” explains Kevin, “because most people, automatically assume that romance and disability don’t go together.”

Rita is bubbly and bursting with life. She’s so full of energy and enthusiasm that the wheelchair she has to use, is so incongruous with her personality that it sticks out like a sore thumb. “She never stops,” says Kevin, who on the contrary, is serene and on the quiet side. “She’s always inventing things to do, places to go, and talks a lot,” he adds with a naughty smirk directed at the love of his life.

Both Rita and Kevin have a condition called Muscular Dystrophy (MD), a genetic disorder which weakens the body’s muscles, with most people ending up in a wheelchair. It is a cruel degenerative condition which raids the nervous system, leaving these persons with very little physical movement, and a short life expectancy.

Rita’s parents first noticed that something was wrong with her when at a young age she starting falling over very often. She was only eight years old when she was diagnosed with MD and by the age of 11 she had stopped walking altogether, and by age 16 she had also lost all movement in her arms. Today, 27 years later, she uses an electric wheelchair and only has some movement in her neck and shoulders. Kevin, who was diagnosed at age 12, also uses a wheelchair, but luckily still has some limited movement in his limbs.

“There is no cure for MD,” explains Rita with a resigned smile on her face. “For the time being it’s a life sentence. We can only try to control the symptoms and hopefully slow down the inevitable degenerative process.”

Kevin and Rita met over fifteen years ago when they were both members of the Muscular Dystrophy Group. “We used to meet once or maybe twice a month for meetings and other activities organized by the MD Group. For quite a while we were just mere acquaintances, but after the summer of 1996, things started to change slowly,” explains Rita.

“That summer Kevin was planning a trip to Slovenia. He was going on a youth camp organized by the European Alliance of the MD groups, together with a friend of his. Unfortunately however, Kevin’s friend passed away before the trip, and I was chosen to replace him,” adds Rita.
“The trip was amazing. We had a great time together, and when we came back, we found ourselves calling each other and spending hours on the phone. We had the opportunity to see each other more often when we both became members of the MD committee and by time we grew closer and closer. For quite a long while however we remained just friends, but the more time I spent with Rita, the more I yearned to be with her,” says Kevin.

Rita lost her mother at a young age and spent a few years living with her grandmother, but when she too passed away Rita spent four years living alone. “I used to have family members and helpers come in at different times of the day, but essentially I was living alone. I used to go over to Kevin’s house every Friday, spend the weekend with his family, and leave on Sunday night, where Kevin’s mother was kind enough to help with my basic needs. During these weekends, Kevin and I started to get closer and closer, but still nobody imagined that we were becoming more than friends. When we first broke the news that we wanted to get married, everybody, especially Kevin’s parents, were total surprised and, to say the least, shocked.”

“At first they couldn’t understand why we would want to go through the hassle of moving into our own house, and quite frankly they did not think that we could cope all alone,” says Kevin. “They always did a brilliant job taking care of me, and being the youngest of all my siblings, it was even more difficult for them to accept that I wanted to leave.”

“But we had absolutely no doubt that we’d make it. We loved each other the way people in love, love each other, and though it is difficult for people to imagine how that can be given our disabilities, we wanted to act on our feelings, we wanted to make our relationship official, and we wanted to have our own space.”

“We knew we’d have to face a lot of resistance,” adds Rita, “but I had already proven to myself that I could be independent and live alone; and I knew that Kevin would be too. We both felt very strongly that this was a right that we were due.”

“At first Kevin’s parents wondered why seeing each other over the weekend wasn’t enough, but they soon realized that our feelings had grown, and that like other couples we wanted our privacy and our independence. We wanted our own double bed, and our own marital home, and we’re so grateful that they soon came around to the idea and are now very happy for us.”

“Of course we had expected that sort of reaction,” says Rita, “that’s why we had done a lot of research before opening our mouths. We wanted to be prepared; we wanted to have all the answers, to make sure that we would not be dissuaded back on our decision. There were a few very close friends of ours who knew about our plans, and who helped us out immensely. Before breaking the news that we wanted to get married, we had already made arrangements to buy a house, and to get full time live-in help.”

“It is thanks to those close friends, who at the time truly rooted for us, that we are where we are today,” adds Kevin. “And although my parents were very concerned about our decision, once the shock wore off, they turned out to be extremely supportive. My dad helped so much with getting the house ready for us, and up to this day my mother comes over when our live-in helper is on leave as well as every morning before we go to work.”

Rita and Kevin work on a part time basis and need to be at work at 8:30am. “In order to get to work on time we wake up at 5:30am and Kevin’s mother comes over to help him get ready,” explains Rita. “In the meantime our carer helps me get ready. If it wasn’t for Kevin’s mother it would take us another three hours to get ready, and we’d never make it to work on time.”

Both Rita and Kevin had never dated anyone before they started seeing each other, “at least not officially,” jibes Kevin. “In fact we had never even spoken about these things with our families let alone discussed the possibility of getting married. It was taken for granted that it would never happen to us and can’t really blame anyone for feeling this way, because unfortunately, in Malta, we are the only two people with severe disabilities who are married, and living independently. For this reason we want to serve as role models for others in similar situations. It can be done, and abroad it is pretty much the norm.”

Given Rita’s and Kevin’s very restricted movements, the question of sexual relations and intimacy begs to be asked. “For as long as I’ve known Kevin, I could not move my arms, so I’ve always had to ask someone to put my hand on his,” says Rita. “During the wedding, the priest had to help us put the rings on, and the photographer had a hard time capturing a kissing shot with two wheelchairs constantly separating us. Intimacy means different things to different people, and we probably have a completely different definition to what most people understand. For us a special look and a deep intimate conversation, or simply holding each other’s hands constitutes intimacy. Anything which we only do with each other and with no one else is, intimate and special.”

“We sleep close to each other, in a normal double bed, and we’re always as loving as we can despite our physical limitations. Kevin uses a respiratory machine to help him breathe whilst he’s sleeping. Unfortunately, last year, I too had to resort to using a breathing machine whilst I sleep,” says Rita with sad eyes, “so now, we have two machines accompanying us to bed, giving intimacy yet another definition,” she sneers.

“It’s all a question of adaptation, and over the years we have created our own special form of intimacy – an intimacy that works for us and that we never take for granted, because things can change so quickly,” adds Kevin.

Having to resort to using a respiratory machine was quite a blow for Rita’s morale, and it also made travelling abroad more difficult. “I’ve always known that this was part of the natural degenerative process of MD, but coming to terms with it proved to be quite hard. I don’t know what I would have done had it not been for Kevin’s moral support. He was an absolute pillar of strength, and even though he is going through the same physical and psychological pain, he has seen me through the ups and downs like a real hero. In my eyes he is so strong that sometimes I have to remind myself that he is actually going through the exact same thing that I am.”

The Muscular Dystrophy Group was formed in 1980, by a group of parents of children with various forms of Muscular Dystrophy with the primary aim of getting together to share experiences. It now provides support for some 50 people in Malta and Gozo. They can be contacted on 21346688 or at 4, Gzira Road, Gzira GZR 1313. Donations to the cause are highly appreciated.