Isabel Guirao uses leisure activities to promote the integration of mentally disabled young people in Spain. Through a loosely structured program of fun events and classes for both the disabled and others, Isabel is creating a network of community support for the independence and autonomy of the mentally disabled.
A nova ideia
Isabel is changing the system of care for the mentally disabled by introducing leisure activities as a means of integration into mainstream society. Whereas the traditional model of care in Spain keeps the mentally disabled protected and isolated from other citizens, Isabel introduces a way for them to become more involved in their communities. She is doing so by promoting activities, through her organization, Full Sails Ahead, where mentally disabled people can interact and have fun with those living with them and around them. In the process, these groups share their lives with each other and become friends—an important step towards independence for the disabled, and a means of community enrichment. Isabel has created a network of professionals and volunteers to help design and participate in a series of programs for the disabled and others, including art and sport classes, social clubs for outings like movies and meals, and summer camps and trips. Throughout all these events, she encourages her disabled participants to choose their discussion topics and activities, offering them the necessary support to carry them through. Ultimately, Isabel’s vision is that the mentally disabled will make their own decisions in their lives, with guidance from friends and others to help them live as independently as possible. Community involvement is a critical component of Isabel’s idea; she fosters an enabling environment for greater independence of the disabled through other programs to train school teachers and to coach and support their families.
Mentally disabled young people in Spain are strikingly isolated from mainstream society. Isabel’s research has revealed the following statistics: 92 percent of these young people said they had no friends to share their leisure time with (the majority had not celebrated a birthday with people outside of their family circle), 98 percent were not independent enough to move about outside their homes or assistance centers; 61 percent did not belong to any other group; only 3.7 percent attended sports or recreational centers; 85 percent had never slept away from their homes; 40 percent had never gone to the cinema; 20 percent did not use a telephone; and 25 percent were caught up in a spiral of pathological isolation, depression, and social phobia.In Spain, people with mental disabilities make up a silent and invisible collective. Silent, because traditionally they have not had an opportunity to express their opinions; their families, for the most part, have spoken and decided for them; and invisible, because they do not take part in the community areas set aside for other citizens. Society is not accustomed to the presence or the participation of the mentally impaired in its public spaces or gatherings, and ordinary citizens have difficulty incorporating this group in their daily lives. Because of this isolation, and because of the protective nature of their families, the mentally disabled have an alarming lack of independence. They have not been educated to give and receive, to be active citizens, and to demand their rights like, for example, the suppression of barriers and the right to enjoy their leisure time.The work of the organizations and institutions which deal with the mentally handicapped focuses mainly on covering what are considered basic necessities like education, employment, and health care. For decades now, people with mental impairments have been considered, first and foremost, as patients and, later on, as clients. The focus has been on “curing the deficiency” through rehabilitation and education programs. By viewing mentally handicapped people as ill, the aim has been to protect and care for them as best as possible in well established institutions that meet all their basic needs. This model is supported by families, carried out by professionals, and established in warm and secure venues far from community areas where everyone else is living. Little to no interaction with the general community ever takes place. Consequently, mentally impaired people live isolated from what is happening around them—stuck in a parallel world from the rest of society.Despite the fact that leisure time goes hand in hand with quality of life and well being, many organizations in the sector, public administrations, and families do not recognize it as a need for mentally impaired people. On those occasions where organizations working with the mentally disabled provide leisure activities, it is done as a complimentary element rather than as a core focus of their program. Furthermore, this activity is usually exclusive, available just to the handicapped people, their families, and professional care takers. Leisure time activity is not funded by public administrations, which creates a difficult cycle: Since there is no funding, organizations do not usually provide leisure time programs or make them a priority. And because it is not a priority, there is little lobbying for more funds.
Isabel centers her work on young mentally handicapped people (Down’s syndrome, autism, and cerebral paralysis with mental retardation) between 10 and 30 years old. For this age group, leisure time activity is of fundamental importance since it provides emotional well being, builds interpersonal relations and encourages community participation. Since she founded Full Sails Ahead in 1996, Isabel has been using primarily leisure activities, but also supporting programs in the community, to give these disabled individuals the opportunity to lead independent lives.Isabel provides an inclusive leisure time program that takes place within the framework of the existing programs and activities in the community and which is not exclusively set up for the mentally handicapped. Her organization’s activities can be divided into two rough categories: courses and pure recreation. The courses run throughout the regular school year, from October to June. They are focused on art and culture, such as music and drawing, or sports such as swimming, athletics and football. Recreationally, Isabel has set up a social club, which organizes outings for movies, coffee, tapas, and bowling, among other things. Full Sails Ahead also offers weekend activities such as hikes and trips to the beach, and summer activities such as camps and longer excursions. The friendships fostered during these activities are an essential aspect of helping the mentally disabled become independent while allowing them to call on these personal bonds for help in the future.Isabel has structured her organization to encourage independent decision making of mentally disabled people. The planning, management and evaluation of Isabel’s leisure time program are done collectively among professionals, volunteers, the disabled and their families. Mentally impaired people also participate in the management of the organization, including some who participate in the Board of Directors through a representative. A self-managed group of mentally disabled people also discuss and work on topics that go beyond leisure time (housing, friendship, living with a partner, etc.) and which have to do with a quality and independent level of life. Isabel’s goal for the future is for this group to fully manage the organization and represent the mentally disabled in policy making and other initiatives. Isabel is creating an atmosphere in which the presence of mentally handicapped people in society is normal. She is helping the community to learn to relate to them with consideration, as equal to equal, not by preaching a “theory of diversity”, but rather through the living experience of people who participate in the activities of the association. In this way she succeeds in communicating her enthusiasm and encouraging people to enjoy what they are doing and to keep them involved. Since Full Sails Ahead began 10 years ago, more than 500 volunteers, 160 families and 100 community professionals have participated in the activities of the organization. Isabel engages community support to make her program economically sustainable, leveraging existing leisure time community infrastructure. As part of her community work, Isabel addresses two groups who are intimately involved in a changing role for mentally disabled people in Spanish society: parents and school teachers. Because Isabel’s goal is to make disabled people more independent, she knows that part of this involves supporting their families, who are faced with taking on a new role that is less protective and presents them with unfamiliar situations. Full Sails Ahead carries out important work with the families, offering them advice, companionship, and psychological support. Practically, Isabel also offers the families “free time” by taking care of dependent disabled people for a day or a weekend, for example. For school teachers, Isabel offers training so that they can begin to prepare mentally handicapped people from childhood to become citizens who will participate in the community and society in which they live. She does so with the premise that the independence of these adolescents and young adults can only be achieved if they receive an adequate education to prepare them for independence over the course of their lives. Isabel complements her work with disabled people with a campaign to include leisure activities in the public policy agenda for the handicapped. Her goal is to make her model of leisure an important method of addressing the needs of the mentally disabled throughout Spain. From the beginning, Isabel has carried on intensive lobbying which has included strong links with public administration. This has made possible some important achievements with respect to funding, the modification of the “support system” for families, and the evaluation of disability carried out by the administration to determine what aid and services to provide. Isabel is also working with other organizations, sharing her model and experience, so her work can be replicated in other cities. Isabel plans to create a Network of Leisure Time Services throughout the country. In addition, she is leading a working group on leisure time in The Spanish Federation of Organizations for Intellectually Handicapped People that strives to bring about changes in public policy, particularly in respect to funding for leisure time activities for the handicapped.
While she was studying psychology in Granada, Isabel had her first professional internship in a school for mentally handicapped girls. This experience was the key for her decision to pursue a career in the field of mental disability. It also led her to realize what she did not want to do in her work as a professional in the field. From the very beginning Isabel sought her own working methods quite different from prevailing ones in the field. She enjoyed the direct contact with mentally handicapped persons and avoided giving I.Q. tests behind the big desk of her office, which was not always understood by the people and institutions in her profession. When she completed her studies, Isabel worked a number of years as an educational coach in various “integration schools” (integrating normal and mentally handicapped children) in Almeria. During this period she dealt with children and adolescents with mental disabilities, their teachers and their families. She spent a lot of time in the classroom helping teachers organize activities for the students both inside and outside of the school; and she visited the families of the mentally handicapped children. Since her daily experience gave her an in-depth knowledge of the children’s lives, she realized that when the institutional support was over (classes, visits, etc.), there was nothing more for them to do. Their leisure time did not mean fun and diversion as it did for the other children, but rather it meant loneliness, boredom and exclusion as well as a burden for their families. For that reason Isabel, along with four other women (professionals like her and mothers of mentally handicapped children) decided to set up Full Sails Ahead to bring color to the lives of these young people and give them the opportunity to enjoy true leisure time, to dream and share their dreams. They sought the appropriate training and orientation as well as the support of young volunteers and they began to work.Isabel has the ability to communicate and is very persuasive. She understands the role she needs to play to spread and replicate her work. But she also knows it is critical to remain engaged with the activities of the association since it is her contact and experience that underwrite her work; she does not want to break the link that grounds her work.