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Interview: Roberta Bower from Santiago, Chile, Fundación Crescendo

January 27, 2012

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We were so excited to connect with Roberta Bower, an ex-employee of Spectrum who came to us as a student from a Community Support Worker program and quickly proved herself an insightful and dedicated support person, as well as a great friend to many.  We hope to continue our connection with Fundación Crescendo and have sent them some books and other materials.  We are trying to organize a Skype call with self advocates, a Spanish interpreter and some folks from there.  We’ve already connected with a Spanish self advocate and her support person who want to help!   If you have disability related materials in Spanish plain language, we’ll be happy to send them on to Roberta.   Here’s the interview:

Where are you and what do you do there?

I live in Santiago, Chile where I am a full time volunteer with Fundación Crescendo.  We are a non-profit agency that supports adults with intellectual disabilities.  Crescendo was started by an American missionary who came here 14 years ago.  In 2008, it became a registered Chilean non-profit.  This was a great step towards it being “by and for” the Chilean people.  Right now we have two programs:  a day program that operates our Centre for Psychosocial Support, and one group home.   I work in both places.  At the group home, I meet with the staff regularly to hear about what the folks are doing and what challenges come up.  We are working together to move away from the staff doing everything for the people who live there, to supporting the folks in managing their own home.  I also work with the people who live at our group home to learn about what it means to live in together, what is good about it,  and how that can be better. 

Folks from the house who want to, come to church with me on Sundays.  When they first started coming with me, the people at the church were nervous and didn’t know what they were supposed to do.  Before much time passed, they realized they didn’t need to “do” anything, just be themselves.  If I ever go by myself, I am asked, “Hey, where are the others?”  One of the women from the house was invited by some people she met there to their house.  It was probably the first time she had been invited to someone’s home that wasn’t family or paid to be with her. 

At the Centre, I work with the Occupational Therapists who manage the programs.  They are very interested in the way people with intellectual disabilities are supported in Canada and the US.  Together we are working toward more community involvement and moving away from a “workshop” model to community integration.  Our first participant has been offered a job in the community – a real job, with real pay and responsibilities!  Carlos will start when summer holidays are over at the end of February. 

How many folks are supported by your organization?

We are supporting 17 people and their families.  We have 7 people who live in our group home.  They and 10 others come to our Centre each weekday. 

What kinds of challenges are you facing?

People who have disabilities are not as visible in the community here as they are in Canada.  For example, I had been here for over a year before I saw a person who had a disability on the bus.  Solange, our Executive Director, told me about a person in her neighbourhood who had an intellectual disability and never left the house.  The family was ashamed; they thought they had done something wrong and were being punished.  They had the windows in the house changed so they were up very high and no one could see in the house.  One day there was a fire and the son couldn’t get out.  He died in the fire.

Some of the people I have met here who do not have disabilities had never been introduced to anyone who does.  It is a whole new experience for them to learn that people who have disabilities are interesting and have abilities.  One time a friend of mine told me about being on an elevator with a woman who had Down syndrome.  She said before she met me, she wouldn’t have known what to do.  She would have thought she needed to treat this woman differently because she had a disability.  Since she met me she said, she realized she could just talk to her like she would anyone else.  She said the woman was very friendly and interesting to talk to.  I am glad I have been given the opportunity to help people see beyond stereotypes and the fears that come from them.

Families and individuals who have intellectual disabilities receive no support from the government or anywhere else after that person reaches age 26.  Before that age there are segregated schools for people who learn differently.  The government has stated that children who have disabilities are to be integrated into regular classrooms but it is yet to happen.  There are very few residential alternatives to institutions.  Some families have no choice but to send their family members to places that none of us would want to live in.

We are optimistic though.  Last year, several agencies that support adults with intellectual disabilities and their families were interviewed by the government for some pilot project funding.  Out of all those interviewed, they chose Crescendo for pilot projects in three areas:  support to families, residential programs, and day programs.  Crescendo was the smallest agency and the one with the least technological resources.  They said we were chosen because of our attitude of respect and giving dignity to the people who are supported by Crescendo.  They want us to create programs to support the families, provide more residential service options, and increase the services provided at our Centre.  We will be busy!  One of the pilot projects we will be funded for is a Shared Living project.  In Spanish it is called Vida Compartida.  Soon I will have two room mates, people who now live in our group home.  We are excited about these opportunities to provide support to families and our participants, and demonstrate to the community at large how much we need to have individuals who have disabilities as part of the regular rhythm of life.

What do you think the main differences are between the kind of work you did here with folks with disabilities and what you are finding there?

People are the same everywhere you go.  We all have the same needs and wants.   There are however cultural differences that must be taken into account and respected when we are looking at developing services.  When I was training to be a volunteer missionary, I studied a model of service delivery called ABCD – Asset Based Community Development.  This is what the community living and self advocacy movements have been saying for years.  Look at what the community you want to serve has to offer and base your “help” on their abilities or assets.   Don’t try to cram your ideas based on another culture into this one.  For example, families are very close here.  People do not place the kind of value on “independence” we do in North America.  That is great, because it will help all people, not just people who have intellectual disabilities, move to interdependence which is better than independence.  We all need each other. 

People here would like to be helpful – how could we help?

We would love to see people who have intellectual disabilities working together to become self advocates.  They have so much to offer but have not yet found their voice.  We are looking for self advocates who speak Spanish and would be interested in sharing their experiences to help our friends here start their own self advocacy groups. 

What’s a last thought you’d like to share?

Living and working in Chile, I have experienced what it is like to not understand the world around me.  When I moved here, I spoke no Spanish; I didn’t understand the culture and felt overwhelmed.  It was so much work just trying to understand!  I was tired all the time.  My friends here who have intellectual disabilities became my mentors, my teachers, my support.  It has given me some insight into what it is like to be different and have challenges understanding the world around me.

3 Comments leave one →
  1. petelegrys permalink
    January 27, 2012 3:07 am

    This is great, no conferences, no plane flights just Skype and a translator and self advocates are talking and sharing with each other

  2. January 30, 2012 5:31 pm

    We at Axiom News have a page dedicated to the Inclusion movement in Canada and worldwide. We’d love to repost this as a blog. Do we have permission to do so?

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