How We Began

By Diane Allen
Co-founder & Volunteer Executive Director, Infertility Network

In the summer of 1989, at the height of my infertility crisis, I phoned every women's organization in Toronto I could think of looking for information and support. I thought that, surely, in a city of 3,000,000+ people there must be somewhere I could go for help! I met with many dead ends and was referred in circles, until someone suggested I call the Planned Parenthood Federation of Canada in Ottawa, and they referred me to the Infertility Awareness Association of Canada (IAAC).

I will always remember my first phone call with Trish Maynard, then IAAC/National Executive Director, and the sense of relief that, finally, someone understood my pain. When Trish asked if I wanted my name given out to other people who called from the Toronto area, I jumped at the idea.

I didn't know one other infertile person! I had no source of support. I was getting all the comments most infertile people hear:
• Just put it out of your mind and you'll get pregnant!
• Just adopt ...
• Just get in shape ...
• Just go on a holiday ...
etc., etc., etc.,

And, because I had a child, then 4, conceived through fertility treatment after 2 miscarriages, people also said:
• Why do you want to start this over for at your age?
• You're so lucky to have your son. Why don't you just put it out of your mind and get on with your life?

Of course, I am lucky to have my son! But I still wanted what the rest of the population takes for granted, and what all infertile people want: the ability to have children, the chance to decide for myself the size of my family, to have control over my body.

Many people who have had one child find they are unable to conceive again. They often feel they have one foot in the world of the fertile and another in the world of the infertile, but don't really belong in either; sometimes they are not completely accepted by either.

I was part of the first generation to have ready access to (what was supposedly) reliable and safe birth control and I assumed that once I stopped using it, I would get pregnant. When this didn’t happen, it seemed as though I had lost control over my body and my life. I felt a deep sadness about the miscarriages, as though I had failed those babies in being unable to carry them to term and that my body had failed me.

The other person who helped me through this difficult time was Joan Wright of the Regional Women's Health Centre in Toronto who asked: "Do you feel as if people are trying to hurry you along, that they want you to be somewhere other than where you are?" That was exactly how I felt. She told me, "They mean well, but they can't handle your pain. They want to fix it so they don't have to deal with it. You are where you are now. You won't always be there. You need to accept yourself and your feelings, and find other people who will accept and nurture you."

By the fall of 1990, IAAC had put together some materials to help people establish support groups and I phoned everyone I'd had any contact with about infertility. That was the beginning! 10 people attended that first meeting. Most of them stayed around and a few others joined us while we spent the first year laying the groundwork.

Most of our time went into compiling a list of community resources (doctors, clinics, counsellors, adoption agencies, etc.) which eventually became a reference for our telephone support committee; Cathy Ruberto (then Assistant Manager of ReproMed Ltd) did a large part of the research. Linda Russell, a volunteer with a sales background, encouraged us to put a value on our work, and convinced us that patients and clinics would pay a small fee for the information we had gathered and put together as a resource book (useful in pre-internet days).

In late 1991, volunteers Lea Eliopoulos and Sherry (Franz) Dale, planned our first seminar series. Our very first donation (from IVF Canada) paid for printing the advertising flyer and the Women’s Health Centre generously agreed to provide free meeting space. We had no money for postage, so I strapped my son into his car seat and spent days driving around the city delivering the flyers to clinics and doctors’ offices. Sherry loaded up her bundle buggy with more and walked up and down University Avenue, dropping them off at the hospitals. Other members of the group pitched in as well. 

I can still recall excitedly phoning Sherry when the first registration arrived in the mail: “Someone registered!” The very fact that someone would pay money for something our small group of volunteers had organized seemed amazing!

The first series was sold as a package deal: 1 seminar a week for 6 weeks, and covered a wide variety of topics. We did one night on “Choices” which included donor insemination, adoption, and childfree living, quickly discovering in the process that each of these was an evening in itself.  The once-a-week pace nearly killed the organizers, but really brought the participants together; many of them got to know each other, met for dinner beforehand and talked long into the night in the parking lot afterwards.

In the end, the seminar series sold out, and we had a long waiting list of disappointed people asking when the next series would be. We had thought we would just rerun the series, but it was clear we could not. We were exhausted, physically and emotionally; we needed to regroup and to figure out how to handle the influx of willing volunteers that the seminars had generated.

Over the summer, we developed a committee structure as a way of involving new people. Often, the committee became an informal support group for its members. That fall (1992) we changed to a once-a-month seminar format which proved more manageable.

For the first two years of our existence, we had no money to pay for a separate phone line and, so, we just used my home number. This situation became unbearable after an article in the April 1992 Toronto Star produced 100 phone calls within a few days; the seminar registrations paid for a separate phone line and we set up a Telephone Support Committee which has now responded to thousands of calls. We’ve since given hundreds of interviews to radio, TV, and print media, and – almost – lost our fear of public speaking along the way.

We became very active politically in an effort to stop the Ontario government de-listing IVF from OHIP. In the course of this long and exhausting fight, we organized a phone/fax/mail campaign (to the Ministry of Health, the Opposition Parties, and the Ontario Medical Association), met with the government and the Opposition Health Critics, presented written and oral briefs to the Joint Review Panel on de-listing, and held a press conference at Ontario Legislature which featured another co-founder, Kathleen Taylor, and her IVF baby, and Deborah Tennant, then chair of our Media Committee, who was pregnant through IVF. The legal background of Debra McNevin, then our Advocacy Committee Chair, was a tremendous resource in developing detailed and well-researched arguments.

In 1995, we incorporated as the Infertility Network in order to:
• limit the personal liability of our volunteer Board of Directors.
• make us eligible for Board development workshops and other United Way services.
• enable us to sign contracts with suppliers, staff, etc.
• allow us to apply for charitable status (granted 1996).
• help us qualify for government grants.

We are not an organization that anyone wants to belong to. After all, who wants to be infertile? Joining is, in some way, an admission that there is something wrong, something much more serious than just not managing to have sex at the right time of the month.

Yet, it is by joining together with other people that we get help, help others, and help ourselves in the process. All of us derive a great deal of emotional support from working together with others whose experience is in some way similar to our own. No one will deny your pain, tell you to get on with your life or offer you simplistic solutions.

Joining provides a wonderful opportunity to network with others, share information, concerns and feelings in a supportive atmosphere, while working to establish something that we know is really needed. I sincerely believe that this networking can improve your chances of a successful outcome; certainly, it can go a long way towards healing your very battered spirit.

More than 30 years ago in the United States, one woman, Barbara Eck Menning, was looking for information and support for her infertility, and finding nothing, decided to do something about it. She started Resolve which now has chapters nationwide offering support.

In Canada, there is now a support group in most provinces, started and maintained by the hard work and dedicated efforts of volunteers. I encourage you to get involved in the group closest to you, or to start one yourself if none is available. (We can help you do this!) The Infertility Network tries to stay in regular contact with all these groups, to share information and ideas and strategies.

Our goal is to be there for you wherever you are in your infertility journey, but we need your help to do so. We are a diverse group. Some of us are couples, others single. We are all at different stages:
•  Some have children (through assisted reproductive technologies, adoption, or  because they were not infertile until they tried unsuccessfully to add to their family); many do not have children.
•  Some are in treatment; some have stopped treatment; some are pursuing adoption. Others have decided to live without children. Many are trying to decide on their next step.

I invite you to support our work to help people just like yourself by making a donation now!

(My sincere apologies to the many other wonderful volunteers who have helped out along the way but who are not mentioned here due to limitations of space.)