Your commitment to Special People
Sister Phyllis Heaney has worked with people with disabilities and in pastoral health care in Sao Paulo, Brazil since the mid-1970's. As in many places around the world, she found that these were people on the margin of society - hidden from view and stigmatized. Her work with the physically handicapped was called Christian Fraternity of the Sick and Handicapped. During this time, she met Jean Vanier, founder of L'Arche and co-founder of the Faith and Light communities.
Around 1985 she met the founder of the first L'Arche in Brazil, Sylvia Taveres. This was an inspirational moment for Phyllis' work with special children.
Phyllis went to a new parish in Jardim Angela around 1991. There she began a ministry with people with intellectual disabilities. Her meeting with Vanier inspired her to form a Faith and Light community there. This involved monthly meetings, where mothers had time for reflection while the children played. The group continued to grow in Holy Martyrs Parish in Jardim Angela and the surrounding area. Families were encouraged to have a vision of living life to the full* and were helped to reflect on the beauty of being blessed with a special child.
Realizing a dream
Phyllis dreamed of having a house where children with intellectual disabilities could stay and be cared for while their mothers had a weekly day off to care for themselves. The target groups would be the vulnerable and economically poor, and those rejected from their area. With help from the priests and parishioners, she obtained donations, mostly from Ireland and England, to buy a suitable house. Called Nest of Hope, it uses the image, from a book by Jean Vanier, of a nest as a safe, supported, and secure place that allows the young to fly when they are ready. It is a welcoming centre with a garden.
More support allowed employment of three people: a cook, a driver, and a special needs carer, and to buy a van. Twenty volunteers help with activities.
As word spread, more families participated. While the original plan was for mothers to have time for themselves, these enterprising women instead used this respite to take jobs such as doing laundry to earn an income. The arrangement is that the children come from Tuesday to Friday, spending one to four days depending on the economic situation. They are given breakfast, dinner, and afternoon tea. Monday is set aside for mothers to see a psychologist if they wish.
One dream led to another. The 'Forum for Included' was developed to struggle for the rights of special people, to be their voice to the authorities. The Forum advocates for access to current services and for developing services that are needed.
At the Forum one day, Phyllis and a mother of a special child noted that the number of autistic people at the Faith and Light meetings and at Nest of Hope was increasing. They decided to discuss it at the next meeting. A representative from the health centres said he would do a survey. He discovered that there were eighty children with autism in the health centre catchment area alone. Children with forms of autism were not being diagnosed. A representative of the Pro Autistic Movement was invited to come to a meeting of mothers of autistic children. There is now a centre specifically for looking after autistic people and people with mental disabilities under twenty-one years of age. There is a social worker from the centre on the Forum.
What are the needs?
Recently Sister Phyllis helped to organize a seminar to raise awareness about autism and to get to know the parents of autistic children and their needs. Holding it in a hospital gave recognition to the issue. Most importantly, on the panel were two mothers of autistic children who could 'speak the language' of those affected. There was a very positive response from the participants.
Using available statistics about autistic children, an evaluation of the seminar concluded that development on three fronts was needed:
1. Professional: rights to access available services and development of necessary ones
2. Cultural: social inclusion: developing gifts and recognizing talents, participation in games (e.g. in the local park)
3. Social: support groups: Mothers will meet for coffee and reflection, getting to know each other. This is based on the Faith and Light vision.
Phyllis spoke about the inspiration for her work with those with autism. She remembers the look in one mother's eyes when she was told her child could not be included in the programme, a look that said: "Yet another door has been closed to my child."
*From Jn 10, 10 and Jean Vanier