It’s a hot July day and the Congregational church in Wethersfield is adorned with flowers. All the guests are seated including the couple to be married. It is a typical wedding scene with not so typical a wedding couple. The bride has cerebral palsy and the groom, diagnosed at birth, has a developmental disability.

On July 15, 1995, Pam and Claude were married in Wethersfield. Only a few years ago, people would never imagined this moment of happiness; in fact, if it had taken place at all it would have been hidden from view. This is a day when old traditions are broken and new traditions are embraced. This extraordinary event has helped to reshape the way people think about marriage among people with developmental disabilities.

This issue of HarcToday focuses on the complex subject of marriage. Who would have imagined entertaining this notion 48 years ago when HARC was founded? Now many people with developmental disabilities are asking why not? During the course of re-searching the article, interviews were conducted with individuals with developmental disabilities, their parents, family and support staff. While in some ways more questions were raised than answered, there was a feeling of openness among many people to the idea, along with many reservations.

Joyce Peters, HARC’s Director of Programs and Services, attended Pam and Claude’s wedding, and was thrilled to have witnessed the joyous event. What impressed her about the wedding was the wonderful support the couple received from their families. "Both families really supported them and had a strong sensitivity to their situation." She went on to say, "The clergy made sure that they had special chairs to sit on at the altar... they took extra care to make sure the event was meaningful and special."

"Just ten years ago the issue of people with mental retardation living together in marriage was taboo," says Ms. Peters. She attributes the shift in acceptance to the change from institutional care toward community based living. Less than 20 years ago people with developmental disabilities were "hidden away" from society, mostly in institutional settings. Independent living has brought people with disabilities out and into the community. It has provided people with developmental disabilities with a better quality of life and has opened up a whole new world of living that the non-disabled person takes for granted.

"The more people can live independently the better," Peters explains. "Guided by staff and family members, persons with disabilities will be interacting with the community in ever increasing numbers. They observe their peers moving on with life, either getting an apartment, a job, or getting married. They become inspired, like we all do when there are opportunities for appropriate peer modeling."

To Pam and Claude, who are both in their early forties, marriage means sharing the household duties, shopping for groceries together and when disagreements occur talking about them and working it out. And, of course, doing a little something special for one another every now and then. For example, Pam says, "on special days, like birthdays, we make each other breakfast, and if I come home first, then I make the dinner. If Claude comes home first, then he makes dinner." Pam says of Claude, "He’s the guy of all guys."

Katie, who is single and lives on her own in an apartment with a roommate, has been dating her boyfriend for 10 years. She says that dating is the first step toward marriage and that dates are important to get to know a person better.

Jennifer, who is in her twenties and lives with her parents, explained that marriage to her meant knowing where your husband is. "You have to keep your husband in focus and you need to know where he is at all times." She added that it is important in a marriage to be responsible for one another. Jennifer and her boyfriend are talking about marriage and have even, tentatively, picked the year 2000 for their wedding. When asked what she likes about her boyfriend, she said, "He’s responsible and he tells me where he’s going all the time."

Beth, who is also in her twenties and lives in her own apartment, has a special friendship. She describes marriage as romantic. She characterized her relationship with her close friend as very special and different from her other relationships. Beth likes to make him dinner and he likes to make her smile. What she likes most is being able to talk with him.

Rosemary, who is definitely seasoned in life, has been married and divorced. She and her ex-husband are much better friends now. She likes the fact that he looks out for her and that he will repair her television or stereo when they break down. Rosemary said that she enjoys her independence, although if the right guy came along she might consider marriage again.

Obtaining a marriage license is not the only barrier a couple with disabilities encounters. The State of Connecticut, as well as most states, mandates that in order to receive a marriage certificate the couple involved must be "coherent and consenting." Consenting is relatively clear; coherent is another story. One wonders just how many parents would agree that their non-disabled children were coherent when they selected their spouses?

Not surprisingly, the parents are the ones with the greatest concerns: Three major fears emerge when parents consider their adult disabled child getting married:

HARC’s Executive Director, Stephen Becker, indicated that most parents feel anxiety when thinking about their children leaving home. This is a normal parenting response. "Letting go is a dynamic process that is facilitated by the child’s emerging competence i.e., anxiety levels decrease as the child demonstrates to the parents that s/he has become skillful and responsible." There is also a persistent pecking that the child does to get out of the shell. After a while, parents ride through the anxiety until ultimately it dissipates.

Dr. Becker continues, "In the case of a child with a disability, parents have a more difficult time assessing and reassuring themselves of their child’s competency. In many cases it involves more risk- taking and parents are too fearful of the repercussions of a bad judgment call. Often times a person is perfectly capable of being more independent, but the parents’ anxiety is simply too uncomfortable for them to tolerate letting go. However, most parents get through it and find great pride and satisfaction with their child’s emerging independence. With regard to the assertiveness issue, most adults with mental retardation do not have the resources or power to insist upon emancipation, even in areas where they are competent. Their locus of control is so heavily placed in their parents’ hands. So, help is often needed to get this dynamic process moving or else we find the family unit stuck at very early stages of development."

The subject of sex is also difficult for many parents. In the case of a child with developmental disabilities, it is compounded with a variety of issues including bearing children, health and safety, issues around naiveté and abuse et al. For the purposes of this article we are limiting the discussion primarily to marriage, recognizing that there are a variety of sexual issues prior to and during marriage which may be of concern.

Many parents, while coping effectively with their own child’s disability, have made it clear that they do not want to take on another responsibility.  They are fearful of getting into a situation that they can’t handle with a person who is outside of their control. "I don’t want to be put into a situation of having to do much more than I am doing right now," one parent admitted bluntly.

Other parents are more open to the idea. June, whose daughter Beth is developmentally disabled, is approaching this situation. Beth, in her twenties, is living in a supported living program in her own apartment and June is slowly transitioning from being a mother to becoming a supportive guide in her daughter’s life. To her delight, June’s relationship with her daughter, which has always been close, is evolving into a very special and unique friendship.

Recently Beth announced that she is in love and would like to marry. June acknowledges that this love her daughter feels is real. "Beth knows the difference between her love for this special person and her other friendships with male friends. She has a different emotional tie with her male friends than with this particular man. He’s been calling her for almost three years," June said.

June and her husband understand that their daughter is growing up, and they want her to have the opportunity to live as normal a life as possible including positive and safe experiences. "My husband and I talk to Beth about marriage and dating and what is appropriate in a relationship."

June is aware that these two people are thinking things through on their own. She understands that as a parent it is her job to guide Beth through life situations. "We have explained to Beth that there are certain protocols for her and her close friend in thinking about a future life together. I’ve said to Beth that it is very important for both families to discuss the situation and to talk with our family priest."

Another fear a parent has, perhaps even more prevalent than the fear of separation, is the thought of their child being sexually active and possibly producing children. Most parents interviewed for this article were not adverse to their child getting married or having a special relationship with a member of the opposite sex, but they were concerned about the possibility of their child bearing children. Most felt that their children were not capable of meeting the demands of caring for a small infant, let alone facing the demands of a lifetime of child rearing.

One mother, Susan, whose daughter Jen is developmentally disabled, said that she felt her daughter could not take care of a child. She feels the burden would ultimately fall on her and she is not prepared to be a mother again.

Dr. Becker felt that successful marriages of some couples with mental retardation support the notion that marriage may be a viable option for some people. When asked about bearing children, he suggested that people who can’t take care of themselves, whether they have mental retardation or not, should not have children. "It doesn’t make sense to bring a child into an environment that is not safe." He supports responsible decision making regarding both bearing children and marriage.

HARC has a guideline on sexuality entitled, Sexuality in the Lives of People with Mental Retardation: Rights and Responsibilities. The thrust of the guideline is to link responsible behavior with one’s unalienable right to live freely which include:

HARC also encourages (not requires) its clients to discuss plans to have sexual relations with their future partner prior to any intimacy and to discuss these plans with a close family member and/or staff person. Such candid conversations can be helpful in making sure that adequate information and education are in place. Dr. Becker says, "We want to act reasonably and responsibly, balancing individual rights to privacy with prudent decision making."

Fear of sexual behavior among people with developmental disabilities is a fear experienced not just among parents but among the general public as well. In her book, Couples with Intellectual Disabilities Talk about Living and Loving, author Karin Melberg Schwier writes, "We are a society particularly disturbed with the idea of people who have physical and/or intellectual disabilities making love, expressing their sexual desires, possibly producing children or even being intimate with one another."

She is concerned that people with intellectual disabilities are not being properly educated about appropriate sexual behavior. There are a lot of people who are confused because they are receiving mixed messages about sex, intimacy, and dating. Because of this confusion some of these people are being punished for expressing their sexuality inappropriately. Schwier quotes noted Canadian sexuality counselor and author, David Hingsburger, who notes that most of the people he meets are, "in trouble because of their curiosity." She also points out that many people with developmental disabilities are getting older and are not being educated about sexuality.

The same concerns were expressed in an interview with a HARC group home staff member, Liz Kelly. Ms. Kelly strongly feels that sexual behavior needs to be talked about more and forums need to be made more available to people with disabilities. In her eight years as a group home care provider, Kelly has witnessed some inappropriate sexual behavior. "I see this sort of thing happen a lot and I really feel for them. They have a desire to be close. Hugs and kisses from their parents or family just doesn’t do it for them any longer. These people are adults and they don’t always have the opportunity to meet someone; we explain (at the group home) that dating is not encouraged among house-mates. However, opportunities for appropriate sexual expression are few. "

Kelly also explains that while most of the residents may have limitations, they are most definitely adults who, as they age are gaining life experience.

Schwier says, "We forget that sexuality is so much more than merely sex; we overlook the need for companionship, conversation, trust, love and appreciation for who we are as a male or female."

For Pam and Claude, they are fortunate to have those very qualities. When talking to Pam and Claude about why they chose to marry one another and not opt for just being friends, Claude, who gave up his own apartment where he had his own bedroom and bathroom, simply said, "I want to be with her. I want to spend my life with Pam."

When they were asked if they could envision living without one another they both said almost in unison, "Yes." Then Claude said, "I could live without her. I would miss her. But I could still live without her." Pam echoed his sentiments.

Pam and Claude have been married now for three years. In fact, they celebrated their anniversary by going out to dinner and combining their anniversary celebration with Claude’s birthday. Claude presented Pam with two bouquets of flowers and Pam gave him just a birthday present. She explained, "No sense in giving him two presents."

While Pam and Claude may not appear to be the most typical couple, they possess all the core elements of a successful marriage; one of sharing, caring, companionship and a genuine respect for one another. In fact, some typical marriages lack some of these elements. They are fortunate to have created a relationship such as this. All of us should be so fortunate.

Michelle A. Parr Paulson is a marketing communications consultant, based in Chester, CT. She has a brother who is a member of HARC and who is developmentally disabled. She hopes someday, he will enjoy a successful and meaningful relation-ship. Ms. Paulson wholeheartedly thanks those she interviewed for this article, for their time, patience and good humor. We thank Ms. Paulson for writing this article for us.