Pre-Seminar Workshop on Sexual Health of Persons with Severe Disabilities

November 3-6, 2008
Indian Social Institute, New Delhi

The Society for Child Development (SFCD) is organizing a Pre-Seminar Workshop from November 3 to 6, 2008 as an effort to look at the sexual needs of persons with severe disabilities, including mental retardation, cerebral palsy, autism, and multiple disabilities (the Seminar being the National Seminar on Adult Needs of Persons with Severe Disabilities to be held on November 8, 2008 at the Main Auditorium, India International Centre, New Delhi).

The Workshop will be conducted by Ms. Sheila Warembourg, professional sex therapist working with Handicap International (France office) as an Innovative Project Creator and Coordinator since 2000, who provides support service for the emotional and sexual lives of the intellectually disabled; and Dr. Madhumita Puri, Executive Director, Society for Child Development.

Issues surrounding the sexual needs of the disabled will always be delicate and based on very personal viewpoints. However, world-wide research (though very little till late) shows that when a disabled person, a parent or a professional has the opportunity to meet with others in a safe and intimate environment with adequate and specific guidance, discussion is possible. Discomfort, shame, different intellectual and cultural levels only become strengths in the group allowing each participant to evolve at his or her own pace.

The Workshop would aim to address the issues surrounding intimacy and sexuality for people with disabilities. The issues to be dealt with would include for the disabled:

The need to be listened to, counselled, and guided in the ways they would like to live their sexuality;
The need for recognition as humans with emotions and desires for intimacy;
The desire to choose the relationship they live in, and for some, to have a family;
The risk of contracting sexually transmitted infections, including HIV/AIDS;
The vulnerability of disabled people, and especially disabled children, to sexual aggression or abuse;
The need to improve specific quality of life aspects, as personal and intimate as they may be.

It is important for their home and institutional caregivers to respond to the needs and concerns expressed by the disabled themselves. The workshop would aim to encourage personal fulfillment and improved consideration and respect for the sexual needs of the severely disabled. These objectives can be achieved through counselling services offered to the professionals that work with them and the personnel at the institutions where they live and work. Experiences thus acquired, opportunities to learn and share, and the occasion to listen to the professionals of all levels, will give a rich understanding of the issues surrounding the sexuality of those with severe disabilities.

Details of the Workshop:

Theme: Sexual Health, Marriage & Reproduction of the Severely Disabled
Participants: Professionals in the field, Heads of Parent Associations, NGOs
Resource Persons: Ms. Sheila Warembourg, Sex Therapist, Handicap International, France
Dr. Madhumita Puri, Executive Director, Society for Child Development
Disability: Severe disabilities, including mental retardation, cerebral palsy, autism and multiple disabilities
Date/Time: November 3 - 6, 2008; 10.00 a.m. - 4.00 p.m.
Venue: Indian Social Institute, Lodhi Road, New Delhi
Registration Charges: Rs. 4000 (inclusive of lunch, tea, and workshop material)

Tentative Programme:

Day 1:

 

Theme:

Understanding sexuality in the context of our culture - Dr. Madhumita Puri

Similarities and dissimilarities in the cultural view of sexuality - Ms. Sheila Warembourg

Pre-workshop evaluation

Day 2 & 3:
  Theme: Understanding, modifying and developing curriculum in relation to:

 Persons with severe disabilities
 Cultural Issues
 Parental Perspectives
 Challenges faced by master trainers

Pertinent Issues faced in dealing with severely disabled persons:

"My body and the bodies of other men" or "My body and the bodies of other women"

 Presentation of the group leader and participants, group functions: rules-guidelines, time, punctuality, etc.
 Anatomy and words we use
 Puberty: physical changes, changes in our thoughts and in our hearts. Is everyone the same at the same time?
 Becoming a man / Becoming a woman: fears and satisfactions
 Desire for independence

The bodies of those of the other sex

 Reminders about the way the group functions: rules-guidelines, time, punctuality, etc.
 Anatomy and words we use for those of the other sex
 Physical differences between men and women
 Mental differences between men and women
 Option to take home photocopies of male and female anatomy, words we use, etc.

Intimate space and my body is mine

 What do I like? Touch, smell, sight, sounds.
 What don't I like?
 Sensations that I like and don't like
 What closeness and touching can I accept from others: teachers, helpers, friends, family, stranger, etc.? What I don't accept.
 How to say "No"
 When I feel like saying "Yes", where can we find intimate space? Intimate time?
 Who can I talk with if I have questions or doubts?

Where do babies come from and giving birth

 Male and female fertility
 Sexual relationship
 Fetus development and twins
 Birth
 The mothers role, the fathers role
 Do I want to have a baby?
 How to avoid pregnancy, contraception methods
 Condom use : avoid IST and pregnancy
 Option to take photocopies about pregnancy and birth

Relationships and being in love

 Falling in love: what are we feeling? (teaching aid : photo-language)
 How to meet new friends?
 The difficulties to find intimate space
 How to express and share our loving feelings and desire?
 Fear of rejection or the end of a relationship
 Long term relationships, marriage, starting a family: what does it all mean?
 What projects for the future, what would I really want? What worries me?
 Who do I have confidence in? Who can give me advice? Who can help me make decisions?

Day 4:

Theme: Exploring our own sexuality and sharing personal experiences

"Overview and evaluation" - Dr. Madhumita Puri

Resource Persons:

Ms. Sheila Warembourg; A Profile

Ms. Warembourg is a professional sex therapist working with Handicap International (France office) as an Innovative Project Creator and Coordinator since 2000, who provides support service for the emotional and sexual lives of the intellectually disabled. She caters for Professional and pre-professional training for doctors, nurses, teachers, psychologists and other social workers with regard to theoretical and practical considerations of human sexuality (reproductive health, HIV-Aids, sexual violence) in daily life as they accompany disabled or vulnerable populations (France, Switzerland, Kenya, Rwanda, (Tunisia and Nicaragua in progress)). She also serves as a Facilitator for discussion groups about sexuality, intimacy and relationships for people with disabilities.

After completing a Bachelor of Arts in Recreation and Leisure Studies: Therapeutic Recreation from Washington State University, Pullman, Washington, U.S.A., Ms. Warembourg did a Masters in Sexology and Public Health from the University of Paris VII, Lariboisière Medical University. France. She has several publications to her credit, which she has presented in various national and international conferences. She is also a Consultant expert: UNFPA - WHO Guidance note addressing sexual and reproductive health and persons with disabilities, RAFT e-course for Reproductive Health.

Dr. Madhumita Puri; A Profile

Dr. Puri is a doctorate in Psychology (with specialization in disability). She has worked with the All India Institute of Medical Sciences (AIIMS) for 10 years as a Senior Research Officer and Psychologist at the Genetics Unit, Department of Pediatrics.

Having extensive experience in the counseling of children and training of parents in the management of behavioral and scholastic problems of children in the regular school setting, she founded the Society of Child Development, an NGO that works in the area of providing services, innovating delivery models, and advocating for the creation of equitable opportunities for children and adults with mental handicap and other disabilities, in 1992. The Parent Support Network (PSN) of the Society came into existence in 2004. Since then, it has served as an active platform for parents of persons with mental retardation under the able guidance of Dr. Puri. The active participation of parents in the activities of the PSN, namely the Focussed Discussion Group meetings; Workshops on Sexuality and Employment have had a significant impact on them and their age-old perceptions regarding the mentally disabled.

Dr. Puri, apart from having several publications to her credit, is also Director of Prabhat, a special school for children with mental handicap. In 2000, she set up a Vocational Rehabilitation Center for Young Adults with mental handicap along innovative lines. She is also the Convener of Disability India Network, an information web site (www.disabilityindia.org) on issues related to disability in India. She has worked with Handicap International, the World Bank and several other organizations on multiple projects. She has also spearheaded a "Clean Yamuna Campaign" that involves both 1,00,000 disabled and non disabled students from 100 schools to work together for the environment and to receive the opportunity to understand the strengths and weaknesses of each other.