17 Nov Love Without Limits
This feature was first published in Pink Magazine – for the original article click here
It is often assumed that people with physical or intellectual disabilities are either not capable of having romantic relationships, or should not be having any sexual contact. However, Marilyn Spiteri, Inspire’s Adult Training Programme Coordinator, claims that sexual intimacy is a natural right and that young adults with intellectual disabilities experience all the sexual and emotional developments as their peers.
“Despite their disabilities they too deserve the opportunity to express their sexual and emotional feelings. If done appropriately, this is healthy and helps them develop their identity as men and women,” says Spiteri.
Mark Zammit Cutajar (19) was born with Downs Syndrome, and Sarah Micallef (23) suffers from a learning disability due to a small scratch on her brain. Despite having to surmount incredible challenges, including physical ones such as open heart surgery in Mark’s case, and a hip replacement in Sarah’s, they are now dating each other and have been together for the past two years.
Alison Bezzina spoke to Mark and Sarah as well as their mothers to find out more about their relationship.
“I really really love Sarah,” says Mark gingerly. “She is always hugging me and kissing me, and she is always nice to me. Soon, when I turn 20, I think, we will get married.”
“But it doesn’t matter that we’re young,” jumps in Sarah. “My grandmother was only 19 when she got married.”
Clearly the shy one in the relationship, Sarah goes on to explain that although Mark is not her first boyfriend, she has now chosen him forever. “I used to go out with someone else, before” she explains, “but I had problems, and Mark is my boyfriend now, and he’s the only one I love. From now on I cannot have another boyfriend and he cannot have another girlfriend.”
Mark cuts in enthusiastically reminding Sarah of their date, “shall we go to a nice restaurant tonight?” he asks. “I prefer the cinema” replies Sarah naughtily. “Then the cinema it is,” replies Mark without batting an eyelid.
“When I come back from the Special Olympics in June, I’ll turn twenty and we’ll get married Sarah, and we’ll buy a big house,” he adds, as Sarah hugs him passionately.
Marilyn Spiteri explains that people with intellectual disabilities are usually less inhibited in their shows of physical affection, thus attracting more attention to themselves. “In general our clients tend to need more guidance about what is acceptable public behaviour and what is not. Most of them have no qualms about kissing, hugging, and touching in full view of someone else however, with the appropriate explanations people like Mark and Sarah can learn the difference between private and public shows of affection. If they are taught how their bodies work in ways that they understand, then this behaviour can be kept under control, and should not be a reason for keeping them from having romantic relationships.”
It is clearly quite challenging for Mark and Sarah to restrain their loving ways. “I can hold Sarah’s hand when we’re at Inspire,” says Mark reproachfully, “but we cannot just kiss in class, because we’re training hard to find a job and, when we want to kiss we must go somewhere private. But our teachers are everywhere; wherever we go they always find us. That’s why we love the movies, because when the actors kiss, we can kiss too without worrying about being seen.”
“Unfortunately Mark and Sarah do not get a lot of private time” explains, Sarah’s mother, Sue Micallef, “and because of their disability they are much more likely to get a negative reaction if they are discovered kissing or doing something of the sort.”
“But they are just like everyone else,” retorts Roberta, Mark’s mother. “They want the same things out of life. They see their brothers and sisters going out with friends, having girlfriends and boyfriends, going to school and university, and driving. They aspire to have that too. Mark wants to get married and have children, he wants to have a job, a car and a house, and it’s sad to have to tell him that some things might never materialize. I can never get myself to tell him.”
Unfortunately the widespread perception that people with disabilities will never be seriously involved in a romantic relationship, leads to lack of safe sex education. “With Sarah being a girl, I am more worried about her being intimate,” admits Sue. “I have tried my best to educate her in the hope that she stays safe, but simply not allowing her to have relationships is not an option. Banning her from dating would be adding to her limitations, and making her more subject to abuse. That’s not something I want to do.”
“Although it is relatively easy to arrange for Sarah and Mark to meet, I feel sorry for Mark because he can’t just jump into a car and go pick up his girlfriend whenever he wants,” says Roberta. “Most of the time they have to depend on us to make arrangements for them to be together, but sometimes they do go out alone, and we know what they might be getting up to.”
“I do wonder what they do,” says Sue, “but I try not to bombard Sarah with questions as soon as she comes back from a date with Mark. I know that if I do that I will get nothing out of her, but if I’m patient and wait for the right moment, she gives me some details, and I’m happy to know just enough. Sometimes Sarah admits that they hardly watched the movie because they were kissing for the most part of it. I think it’s sweet, and very like what people their age would be doing anyway.”
On Valentine’s day Mark wanted to take Sarah out for a special meal, so Roberta and her husband arranged for them to go to the same restaurant as them. “We had a double date,” says Mark, “and I bought Sarah a gift”.
“I’m sure that they would have preferred to be alone,” says Roberta, “but at the end it worked out well and we enjoyed seeing them so happy together.”
Mark has already bought Sarah a ring, and is determined to marry her sometime in the near future. “It will happen soon, because I love her,” he says. I bought her a ring, a necklace and a scarf.”
“I bought you a watch, which you never wear,” responds Sarah teasingly, momentarily forgetting that they are not alone. “You know that I am willing to marry you,” she tells him as she takes his hand and strokes it gently, “but I also want to take it slow, one step at a time ok?”
“We will, we will,” reassures Mark, dismissing her objections with one manly hug and a kiss on the forehead.
According to the World Health Organization, sexuality is an integral part of everyone’s personality. It is a basic need and an aspect of being human that cannot be separated from other aspects of life. In simple terms sexuality determines how we view ourselves as males or females and is not restricted to the sexual act, but include socializing, friendly activities, and body awareness.
“Mark is quite pleased of the way he looks,” says his mother proudly, “because ever since he was a child, we used to boost him up by telling him that he looks so handsome. Sometimes we over do it and I think that it goes to his head a little bit,” she adds jokingly.
Mark is as fit as a fiddle because he practices a lot of sport, and is part of the swimmers team in the Special Olympics. “I don’t want him to worsen his disability by putting on weight,” says Roberta, “so even though he’s had open heart surgery and suffers from other medical problems, I want Mark to do everything that he can possibly do. Of course I worry, but I push him to do whatever comes his way. I don’t tell him not to have sex or not to have a drink or two. I want him to do whatever it is that 19 year olds do. Maybe it’s easier for me because he’s male, but I honestly believe that he is entitled to life like everyone else.”
“Sarah loves to dress up,” says Sue, “and typical of her peers, she has a wardrobe bursting with clothes. She knows what to wear to make herself more attractive, and I’m very happy knowing that she has Mark to focus on. If she didn’t have that special someone, she might feel starved of affection which would make her more prone to abuse and exploitation. Of course I’m also worried about her getting pregnant, but I would be worried just the same if she had no disability.”
Marilyn Spiteri explains how Inspire’s programmes aim at helping their clients reach their full potential. “This does not necessarily mean education in the academic sense of the word. Sometimes this means teaching them how to become more sociable and have a better social life. Sex education helps them recognize inappropriate actions from people who might be trying to take advantage of them. It also helps them to stay out of trouble. For example, without the proper education a man with an intellectual disability might stare blankly at a pretty woman and this might get him in serious social trouble.”
Both sets of parents would love to see the couple getting married and living happily together. “They will always need support, and will never be totally independent,” says Roberta, “but it would be so nice for them to have each other to turn to.”
“Living without love, without that special someone is terrible,” says Sue. “I don’t want my daughter to be alone. Even if she’s living in a community with supported living arrangements, it’s important that she has that special soul mate with whom she can share her life.”
“We do not know of other couples with intellectual disabilities who are married,” says Roberta, “but I honestly wish that it would be possible for Mark and Sarah to make their dream come true.”
According to Malta’s Marriage Act (Cap 255 Art. 4) “a marriage contracted between persons either of whom is incapable of contracting by reason of infirmity of mind, whether interdicted or not, shall be void.” This means that should Mark and Sarah try to get married, it is ultimately up to the Marriage Registrar to decide whether to proceed with the publication of the marriage banns or not. If the Registrar decides not to, the couple may then appeal the decision in a court of law.
Adults with intellectual disabilities have the right to have children however they often need special support to ensure their child’s wellbeing. “I don’t want Sarah to have children,” admits Sue, “but I can’t tell her that I want to deny her the right forever. I can’t get myself to do that.”
“It’s very likely that Mark is infertile, because people with Downs Syndrome tend to have low motility, but I don’t intend to get him tested,” says Roberta. “I wouldn’t do that to a 19 year old without an intellectual disability and I’m not about to do that to Mark.”
“Reproduction is only one of many other aspects of sexual expression,” explains Marilyn Spiteri. “We give this a lot of attention when there are other aspects of sexuality, such as responsibility, safety, enjoyment and personal choices which need to be addressed. Without an adequate outlet for their sexual needs, people with intellectual disabilities become more prone to sexual abuse and since they might not immediately recognise the first signs they are even less likely to report it. They are also less likely to be believed and might not even qualify to testify in court.”
As Sarah and Mark walk away hand in hand, Sarah puts her hand around Mark and asks “Why do they want to know about our relationship? Why are we so interesting? We are not that special you know!”
