The NADA Story

Presented at the 2nd National Conference
Quebec City, Quebec
By Linda Brazeau

I would like to tell you the story of how the National Aboriginal Diabetes Association (NADA) was formed, as a person who was involved with the formation of NADA from the beginning, and because there needs to be an accurate account of its formation.

First of all, I would like to acknowledge that, throughout the years there has been work done by various individuals, and organizations across the country in the area of diabetes and Aboriginal people.

I have seen research that was done in the early 1980’s, and at that time it was thought that diabetes in Aboriginal peoples was already reaching epidemic proportions.

Some of the initiatives on diabetes were:

• Health Canada was addressing diabetes through their nutrition program.
• The National Diabetes Task Force (1984 - 1987) with its recommendations, out of which the Canadian Diabetes Advisory Board was formed;

Later:

• The Diabetes Council of Canada (DCC) with membership including all the national organizations that are connected to diabetes in some way such as Juvenile Diabetes Research Foundation, Heart & Stroke, Quebec Diabetes Association, CNIB, etc.;
• The National Diabetes Surveillance System (NDSS) where NADA had asked for a representative but we ended up getting a whole committee, which was even better;
• And the Aboriginal Diabetes Initiative (ADI).
• The communities and political organizations have now also been doing great projects and have programs in diabetes.

NADA has representation in the DCC, NDSS, and ADI.

In order to tell the story of NADA, we need to go back and review some of the history surrounding diabetes in Aboriginal peoples in Canada in the years preceding its formation.

History includes but is not limited to:

• 1980
  Urban Native Diabetes Support with Addictions Counseling began in Toronto.
• 1983-84
  Aboriginal Women of Manitoba, Inc. (AWM) under the leadership of Pauline Busch, began addressing diabetes. Interpreters working in hospital at Health Sciences Centre (HSC), Winnipeg in the Native Services Department (now re-named to Aboriginal Services) noticed that they were called quite frequently to interpret for patients newly diagnosed with diabetes, or for rehabilitation after amputations. The interpreters, myself included, alerted the Aboriginal Women of Manitoba.

  *Aboriginal Services is a support service for Aboriginal patients that is offered in the two teaching hospitals in Winnipeg. The interpreters/case workers are also cultural intermediaries who do a lot of support work such as coordinating spiritual ceremonies, arranging for Product of Conception transport (mostly by patient), advocating, generally ensuring that patients’ hospital stay is as uneventful and as comfortable as possible.

  In the beginning, the Aboriginal Women of Manitoba, Inc. was the first and only organization that listened to us as we related our experiences and concerns with our patients. The patients we see in hospital mainly come from Manitoba, Saskatchewan, and Northwestern Ontario. The AWM began work by doing a diabetes Survey in the communities. Interest and support for diabetes initiatives was expressed by some communities that had noticed increasing incidence of people living with diabetes.

• 1984
  Conference “A Traditional Native Approach to Diabetes Balance”, Winnipeg
• 1986
  Alethea Kewayosh hired in southern Ontario as Native Outreach Worker through the Canadian Diabetes Association (CDA), Ontario division.
• 1986-87
  S.U.G.A.R. Group (Strategies for Undermining Glucose in Aboriginal Races) was formed through the Aboriginal Women of Manitoba, Inc. (AWM). The S.U.G.A.R. Group was a networking group whose members changed from time to time. Some members came from the AWM, First Nations communities, tribal councils, Health Sciences Centre Native Services (HSC), St. Boniface Hospital Native Services, Medical Services Branch, Manitoba Health, Mount Carmel Clinic Northern Stores, CDA, Northern Medical Unit, DER Children’s Hospital, other interested individuals, and Aboriginal elders were involved at times.
• 1987
  Health Care and Cultural Change: the Indian Experience in the Central Sub-Arctic. T.K. Young, Toronto Press.

  National Native Diabetes Education Working Group initiated by Health Canada. The committee was chaired by Dr. Jean Steckle from Health Canada. Here again, some of the members changed sometimes. Besides Dr. Steckle, there was Donna Lilly, CDA, Cynthia Abbott-Homell (Health Canada), Noella Depew (Manitoba Health), Alethea Kewayosh (CDA at the time), Theresa Harper (CHR - St. Theresa Point, MB), Rosella Kinoshimeg, (Wekwemikong, Manitoulin Island), Dr. Louis T. Montour (Kahnawake), Dr. Irwin Antone, Kathy George, (Six Nations), Shawnee Williams (B.C), Louise Aubrey (HC), Linda Brazeau, Aboriginal Women of Manitoba, Inc., and Native Services, HSC). There was another person from Health Canada by the first name of Penny, a nutritionist, and Madeline, Nutritionist from MSB.

  B.C. working groups formed.

  Links with Native American Research and Training Centre in Arizona was established through Alethea Kewayosh (Canada) and Dr. Robert Young (U.S.)

• 1988
  Southern Ontario Diabetes Group began.

  Aboriginal Women of Manitoba, Inc. Provincial Assembly resolution was passed, supporting diabetes initiative

  The AWM representatives did a presentation about diabetes at the AGM of the Native Women’s Association of Canada (NWAC).

• 1989
  Duncan Declaration on Standards of Care and Education for Aboriginal People with Diabetes was written by the National Native Diabetes Education Working Group.
• 1990
  First International Native Diabetes Conference, Minneapolis, USA At the time that Robert Young from the U.S., and Alethea Kewayosh, Canada, met, they dared to dream that it would be fantastic if our countries would unite to address diabetes in Aboriginal peoples, so the seed had been planted for an international conference. Dr. Jean Steckle was instrumental in getting the Assistant Deputy Minister (ADM) of Health Canada to attend the 1st International Conference. It was there, at a meeting with Health Canada (the ADM), Alethea Kewayosh, and S.U.G.A.R. Group members that an agreement was made to fund a diabetes coordinator at the Assembly of First Nations, Ottawa. Assembly of First Nations Diabetes Program was initiated, and Alethea Kewayosh was hired as the first National Aboriginal Diabetes Coordinator.

  It was at this conference that strong contacts were made with the other countries that included Australia, New Zealand, and Hawaii. We had a post conference meeting, Hawaii expressed concern about their rising statistics in diabetes and asked if the next conference could be held in Hawaii. So the decision was made to hold it in Hawaii in 1993 and our international conferences were beginning to take shape.

• 1991
  Resolution passed by Assembly of Manitoba Chiefs (AMC) supporting S.U.G.A.R. Group’s diabetes initiative. On-going activities of the S.U.G.A.R. Group included committee and workshop participation, panel presentations, referrals, and networking.
• 1992
  Aboriginal Clinical Practice Standards was presented to the Canadian Conference on Clinical Practice Guidelines.

  Atlantic Region of Medical Services Branch hired a Diabetes Coordinator.(Laurie Nicholas).

• 1993
  National Framework for Diabetes Prevention was initiated by the National Native Diabetes Education Working Group.

  The 2nd International Conference on Diabetes and Native Peoples was held in Honolulu, Hawaii.

  AWM, S.U.G.A.R. Group and AFN Diabetes Coordinator made a presentation to the AMC expressing concern about diabetes and the need to get information to communities. There was a working agreement to work jointly with the AMC Health Committee re: Outreach Program (coordinator position), however, no funding was obtained for the position.

  S.U.G.A.R. Group and the AMC Health Committee also made an agreement to make a joint bid for the 3rd International Diabetes Conference if AFN Health Commission announced another conference.

  Native Diabetes Education Curriculum was developed in Kahnawake.

• 1995
  International Conference on Diabetes & Indigenous Peoples was held in Winnipeg, Manitoba. The S.U.G.A.R. Group members and Alethea Kewayosh, National Diabetes Coordinator, were the main “push” to get the conference in Winnipeg, and planned and supervised this conference, forming the CCPC (Canadian Conference Planning Committee). This conference to date has been the largest of the international conferences held. The S.U.G.A.R. Group hosted the conference jointly with the AFN and AMC. The Canadian Conference Planning Committee members were from: S.U.G.A.R. Group, AFN, AMC, Health Canada, CDA.

  S.U.G.A.R. Group, and Alethea Kewayosh, and CCPC obtained the assistance of the AMC to declare “Aboriginal Diabetes Awareness Day” (First Friday in May, yearly).

  S.U.G.A.R. Group and Alethea Kewayosh (as AFN Diabetes Program Coordinator at the time), and CCPC initiated the process to declare 1995 the Year of Diabetes & Aboriginal Peoples through the FIRST NATIONS DIABETES DECLARATION.

Out of the 1995 International Conference consensus was reached to form the NATIONAL ABORIGINAL DIABETES ASSOCIATION. We had chosen a different name for the association initially, but eventually decided on NADA.

*Note: Alethea Kewayosh left the AFN during the planning of the 3rd International Conference, and Brenda Thomas became the National Diabetes Coordinator.

The national and international exposure that the S.U.G.A.R. Group members and Alethea Kewayosh had during the preceding years, and maintaining contact constantly was very important as talks continued until finally we felt that we had a good proposal to submit to Health Canada.

It must be noted that two people that worked hard to advocate for the formation of NADA were Noella Depew and Alethea Kewayosh. Alethea was no longer at AFN but we maintained contact, and she was willing, once again to put her energies into helping our people. Noella had worked with us from the beginning on the S.U.G.A.R. Group, and continued to work in her position at Manitoba Health as well as advocate, lobby, and work on the committee.

The first planning session we had to plan NADA was held in a cottage (Susan Roe-Finlay’s) on the shores of Lake Winnipeg, near Victoria Beach. The people at this first meeting were: Cynthia Abbott-Homell, Kerri Acland (stayed for part of a day), Linda Brazeau, Noella Depew, Alethea Kewayosh, and Susan Roe-Finlay. This is where we realized that we had taken on a larger than life task. However, we did some work to outline the structure, started work on goals and objectives, and realized we needed more people to help. Needless to say, but the planning committee later expanded so we could have the assistance of experts from various backgrounds.

Planning meetings continued, then one day I got a call from Noella Depew, asking me how I felt about becoming the Executive Director of a national diabetes organization. Of course my first reaction was ”No way”. But these women, as some of you know, are persistent. They both gently coaxed me until I softened a bit, but I was a hard sell and didn’t agree right away.

As in most cases, we had very humble beginnings. NADA’s very first office was an answering machine in the front bedroom/office of Susan Roe-Finlay’s home, and a mailbox for mail. Susan would get the messages and pass them on to me to answer.

In 1996: under a grant from Health Canada; in-kind assistance from Manitoba Health for things such as office space, equipment, and supplies; a grant from Eli Lilly - a pharmaceutical company; and my secondment from St. Boniface Hospital to become the Interim Executive Director, NADA was born. We set up the office at 800 Portage Avenue in Winnipeg. I did not want to leave my job at St. Boniface, so Noella negotiated my secondment.

I worked as Interim Executive Director from October, 1996 to the end of December 1998.

During that time we:

• established the office
• established NADA as a national charitable organization
• wrote the by-laws
• coordinated the Canadian component of the 4th International Conference on Diabetes and Indigenous Peoples held in San Diego, California
• did newsletters
• did workshops
• maintained contact with communities and visited them when invited
• attended events and conferences and made presentations
• assisted in starting diabetes projects in the communities
• made a listing of organizations that fund diabetes projects for fundraising purposes
• assisted the communities and organizations in networking
• did Sadie’s Walk

I spoke to Alethea Kewayosh a few days ago, and she scolded me to remind you of all the hard work and long hours it takes to do the work necessary to make a success of an undertaking as huge as starting a national non-profit organization. Well, we have done it.

In a recent note from Pauline Busch, she said “it took the power of determination as we worked with nothing but that at times. The need for Aboriginal people to recognize change comes because we make it happen, no matter what the obstacles. It is as Creator provided us with pure will.”

And that he has. There were times when things got discouraging, but we pressed on because we knew how important it was to bring the issue to the forefront so that:

• our leadership and country would listen to us,
• so we could try to prevent diabetes,
• so that our people who already have diabetes would get good care,
• so our young moms would have healthy babies. It is so sad when our gestational diabetic moms think their baby is so healthy when it is born with a high birth weight. I remember a mom (a family member) who had 10 children. Only the first child was around 7 pounds. All the others were over 9 pounds. The second last child, a boy, was thought to be a tumor in early pregnancy. Her tumor was born a whopping 12 pounds, 3 ounces. This was in the ’60’s when screening was not done as a rule.
• so everyone could get information, have the means to network and support one another, and develop new relationships.

Speaking for myself, I saw what my own father went through with diabetes. It wasn’t an easy thing to see him go through all that he did. In the end, he gave up after his leg was amputated. He was ready to go home. He left us peacefully, in his sleep early one morning.

I learned a lot from him and other patients. As interpreter/case workers in hospital, we have seen first hand our peoples’ difficulties. Personally, I have seen the misunderstanding and miscommunication between the different cultures. Many times the medical staff cannot understand the Aboriginal patients’ way of thinking and doing things. For instance, patients will take care of a family situation over keeping their appointment with the doctor, no matter how crucial it was for them to see their doctor. I have seen and felt the patient’s hurt when they are first diagnosed. I have seen them try to understand this disease they can’t see. I have seen the frustration when the dietitian tells them what they should eat, and they can’t see their food budgets accommodating that. I have seen their struggles as they try so hard to learn to walk on their prosthesis or “new leg” after amputation so they could go home sooner. At times it was months before they could go back home to their community, and we had to be their family because their family couldn’t be there. We try to make their stay in hospital as comfortable as possible. I’ve seen the squalor that some of them lived in because of the meager amount they have for rent and slum landlords. Sometimes we had to have houses condemned because of landlord negligence, or apartments fumigated because of bugs and cockroaches. In one instance, a family couldn’t sleep because cockroaches were falling from the ceiling all night onto them on their bed. I’ve seen the heartbreak as five family members were diagnosed with diabetes, one right after the other, and saw the deterioration, and finally death. I’ve sat in the hospital chapel and cried with a patient as she was bargaining for her life.

These are just a few examples of what kept me and I’m sure others, motivated to keep on working to rid diabetes from our people. That is what has kept me committed. There are times when we might step back a bit and say I’m not doing any more diabetes work, but we always come back. I know you’ll always find me somewhere, doing something because my heart is with the people.

People are amazingly resilient. These are examples of some bad experiences, but I could also tell you many absolutely fantastic experiences I’ve been blessed with in working with patients. I learn so much from them, and we always learn from one another.

I’m sure that the other Aboriginal Services Workers/Interpreters will tell you the same thing.

I encourage you all to support one another, and support NADA, which is your organization. There have been many talented people that worked very hard to build NADA, and what we have is good, but each and every one of you has a chance to help build this organization to make it what you want it to be. I don’t mean any disrespect to anyone, but we can always build on to what has already been accomplished. I have already seen some great changes that has made NADA even stronger and better. So keep building. Never, ever think that your contribution is too small. Everyone’s ideas, and sharing of experiences are important. We all can learn from one another. We need solid commitment from everyone so that we will have a diabetes free people.

There are many people who contributed to building NADA and we would like to say thank you to all those people. Everyone involved in this work did their part to move the organization along to the next level. There were some of us that started the work, and stayed for the long haul, then some needed to pass the baton to others to continue the work. And yes, we had help from many people and organizations along the way and we thank each and every one. Thank you to all the people and organizations that pulled up their sleeves to help. Some of them weren’t directly involved with the founding process of NADA but their work was important because we networked with them, and shared information. I won’t be able to name them all, but people such as Dr. Louis T. Montour, and Dr. Ann Macauley began work in Kahnawake many years ago in eastern Canada. Dr. Jean Steckle started work in Health Canada. Dr. Jenny Joe, U.S. - worked with Dr. Robert Young and was a resource person, and there were the people on the national diabetes committees. Thank you to Health Canada; Manitoba Health; Eli Lilly; St. Boniface Hospital; and other sponsors; AFN; AMC; CDA; the first Board (I don’t want to name them because I might miss someone but you can get their names from the NADA office) - they took on the job even though they saw the huge workload ahead; the Board Members that were elected at the previous AGM and are completing their terms at this AGM (they’re fantastic - got a lot of work done); the volunteers - including the volunteer lawyers; the NADA staff; communities; community workers; and last but not least, Pauline Busch and the Aboriginal Women of Manitoba, Inc. for listening to us, assisting us to get diabetes to a national forum, and helping us form the S.U.G.A.R. Group, that along with Alethea Kewayosh, became the leaders or ”worker bees” that initiated the formation NADA.

Most of all, thank you to God, our Creator for getting the right people together at the right time, and for giving us all the stamina, strength, determination and will to go on when times got tough, and for all the valuable lessons along the way.

As I was writing this, at times I felt like I was ‘blowing my own horn’. But I had to remind myself this is the way it happened. This is the truth, and it is truly by the grace of God that we have NADA.

1 Cor. 1:31 says ‘Let him who boasts, boast in the Lord. ‘Most definitely, to God be the glory.

Thank you and God bless you all.

Note: Linda Brazeau was the Chair of the S.U.G.A.R. Group until just before the formation of NADA. Moneca Sinclaire, Nutritionist, (S.U.G.A.R. Group member) assumed the position of Chair for a period of time before the Group disbanded and became NADA members.