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Warm and Fuzzy
I am a member of a group of professionals working in the field of learning disability who meet regularly and share good practice, woes, ideas and cake. We often invite guests along to the group meetings to speak on interesting topics and share the things they are doing and this often leads to innovation and change for the people we support.
Love and relationships
This week, we were fortunate enough to welcome a couple with profound learning disability to our group, who, assisted by the care team they work with, have made a DVD about their relationship. Although non-verbal, they brought along the DVD and were clearly happy to share it with us and to help answer our questions that arose from viewing it.
Peter and Celeste (not their real names; I don’t have their permission to share that) were introduced to each other some years ago when the long-stay hospitals they lived in closed down and they moved into the same nursing home . After a time, the nursing home too closed down and the couple were supported to live in a house in the town as private tenants with a care team to support them.
Both need considerable support with daily living; they are ambulant but have significant physical challenges and, since they do not communicate verbally, need a great deal of help to be independent in the community. From the outset, staff noticed they had a very close bond; they would wait each for the other to get ready in the morning, choose to sit closely together and display little touches and looks and gestures. They would become happy and animated in each other’s company.
Noticing a bond
Staff who got to know them began to consider them as a couple because it was so obvious that there was a closeness between them. In their community and in their church they too were perceived as a pair and always referred to as ‘Peter and Celeste’ in the way that many couples become defined as a unit.
Gradually the staff began to see that this was, in fact, an intimate and loving relationship that had developed and they would ensure that the link and bond between the two was supported, through enabling private time and respect for their privacy. The couple’s families were also included in discussions about the growing love between the two; this presented some problems for the aging parent of Peter, who had for many years considered him to be childlike and incapable of adult feelings. However, even she could see how Celeste made her son a happy man and that this was not a contrived notion by whimsical carers, but a very real relationship in an adult sense.
Taking a step
Somewhere along the trajectory of the developing Peter and Celeste romance, staff and friends began to talk about recognizing the relationship in a traditional and formal way. Marriage per se was not on, as there were some tricky issues around capacity to be tackled. Effectively, neither Peter nor Celeste could demonstrate clear understanding of the legal constructs around marriage or give informed consent to enter into that state.
As regular members of a church congregation, it was mooted that a ceremony to celebrate and bless their relationship could be a way to give formal acknowledgement to its existence. The team around them began to discuss with Peter and Celeste and their families and minister what this meant and encourage understanding of the commitment it would demonstrate.
To everyone’s surprise and delight, Peter and Celeste seemed highly excited and interested in this opportunity. Through sharing other people’s stories, photographs and film, they began to understand that this was a way to tell everyone that they loved each other and to show the world how they felt.
The Big Day arrived and the DVD showed the rapturous delight of both Celeste and Peter as they dressed in special outfits and were chauffeured to the church in a stretch limousine, greeted by a huge congregation of family, friends and neighbours. Support staff interviewed described how Celeste wore fabrics she would normally not tolerate, allowed her hair to be dressed and make up applied, even though this was not her usual preference. They felt she knew that this day was one for special clothes and special behaviour.
Peter was clearly proud and delighted with his ‘bride’. His expression when she met him at the altar was the same as any groom - a huge smile, nervous excitement and gentle touches and caresses throughout the blessing. His mother beside him, looking proud and tearful at the same time, helped to support the pair through the ceremony. Afterwards there were photographs, all clearly showing that this very special couple were completely understanding of the day and its meaning and totally happy with everything.
Peter and Celeste live as a couple in their community. Although not a sexual relationship, their support team provides them with private time and encourages the small intimacies between them to continue without remark. This is not a ‘cutesy’ conceit but a very real love.
As professionals, many of us had some doubts about the validity of the relationship when we first encountered this very profoundly learning disabled couple. One or two admitted after viewing the DVD that we had worried it was contrived and false. However, afterward we all agreed that having the express consent of Peter and Celeste, who remained with us throughout our viewing and reacted in a positive and proud way to the images on the screen, showed that they were very much in charge of sharing their story.
During our discussion and question session, we asked them the questions most people ask of couples - when did they meet? What things do they like most about each other? Do they ever argue? All of which were answered with help from their very close and professional care team. It’s fair to say there was not a dry eye in the house as Celeste gently stroked and kissed Peter on the brow while her support worker described how he often got on her nerves with his wandering about when she was trying to look at the TV.
Reflecting on this on the way home, I recalled that back in the hospital where I trained as a nurse in the 1970s and 80s, many people formed close and strong relationships within their wards which we acknowledged and supported to an extent, but I had never considered then or since that these were worthy of better support and recognition. As people moved from institutional settings to community ones we may have unintentionally removed their opportunity to share intimacy with a special other.
All you need?
Everyone at some time in their life needs someone close. Not everyone follows a traditional path and meets, romances, marries and settles with one special person for life, but all of us have the chance to share with another the things that make us human. It doesn’t matter that those people lack the skills to go dating, or are challenged by disability. Watching the TV programme The Undateables will support the view that we all need love in our life no matter who or how we find it.
Not sure I need to say any more. I want to publicly thank Peter and Celeste for the evening they shared their Blessing DVD with a group of grumpy strangers and made at least one of those re-examine her attitude to love and romance.
Ginny Tyler – QCS Learning Disability Expert Contributor