Looking after each other: A dignity promotion project partnership for people with FASD

07/12/2018, Winnipeg, Canada, Clara writes:

Looking after each other: A partnership promoting dignity for people with FASD

A gathering held on mother earth

At the office we were asked if someone would like to go to a gathering with the elders Karen and Wally Swain; they have been invited to share their teachings, and I immediately take the opportunity to say that I would be happy to participate.

The gathering is called "Looking after each other" and it is organized once a year with the assistance of Healthy Child Manitoba Office (HCMO) in support of people with Fetal Alcohol Spectrum Disorder FASD (for more information: www.canada.ca/en) and of women who have used alcohol during pregnancy. Since 2015, the event has involved a network of individuals and organizations that collaborate within the province of Manitoba to promote prevention, research and inclusion activities related to FASD.

The sacred fire

Analyzing the programs promoted by the FASD coalition, it was discovered that 80-85% of the participants, and 95% of the participants in the prevention programs, identify themselves as indigenous. For this reason, the coalition recognized the need to involve the leaders and the elders of the indigenous community, to have a better understanding of how the past has led to the current situation,  believing that (re)connecting to culture can be a great support.

The gathering is held outside of the city, at Lower Fort Garry, where the day starts with the indigenous pipe and water ceremonies. We arrive at this national historic site very early in the morning and about 100 participants gather in a circle around a fire, under the plants. The elders, men and women from all over the province, take their seats on large colored blankets; some of them start smoking long pipes, while others play drums or turtle shells probably filled with seeds. As I sit down on a bench and wrap myself in a blanket, the elders, one at a time, begin to sing in indigenous language(s) and then explain the meaning of the songs in English, revealing the underlying teaching (humility, love, the sacredness of water). When the sun finally rises in the sky and we can see its rays shining through the leaves, we are surprised by a class of children with FASD who, singing a song they have written, illustrate the parts of the brain and how each of them controls a specific function (language, hearing, motion, etc.). Who can teach us things on FASD better than people who experience it every day?!

The community

The class returns to the city and, as we proceed with the program of the day (scientific explanations on FASD and various speeches held by people working in the field), various activities are proposed such as playing the drum, building a stick of life (decorating a piece of wood with beads, ribbons and feathers representing the various stages of someone's life), drawing and coloring. I am told that keeping the hands busy can be a way for people having difficulty listening to the speakers while sitting still for hours. To also stay engaged.

I pluck up my courage and approach the drummers, they immediately invite me to grab a drum and to join their circle. I shyly start to beat the wand on the leather, which bounces back in my hand at every movement. After a few seconds, I am finally able to grasp the rhythm and play in unison with the more expert women of the Life's Journey program (for adults with FASD).

The first day is concluded by two elders who explain to us the beneficial properties of medicines, exhibit many samples of herbs and tell us about their experiences, proud of the spiritual and material support they provide to their community.

The second day begins in an indoor space, due to the rain that has moistened the fields during the night. Some discussion tables are formed - on a territorial basis - and for a couple of hours, the group discusses the possibility of organizing the next meeting in the north of the province - in a place accessible to the surrounding indigenous communities - brainstorming also on how to raise the necessary funds.

What has really impressed me about this second day is the way they decided to explain what the daily life of people with FASD looks like: the (adult) participants of the programs interviewed each other and explained to us how difficult it is to get to an appointment in time due the fact they get easily distracted; how important it is to be treated with respect; what they need (or do not need) from services and support people.

I am taking home something very special from this experience: I will always remember the laughter, the good mood and the genuine way in which the community demonstrates the sincerest support to its members, all of its members.


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