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Self-Advocacy

by Leah Lonsdale

Reprinted from Down Voice, Winter 2007

Author's Note: This article was written for Down Syndrome Association Victoria but is relevant to many who have or are affected by genetic conditions.

Advocacy is key to improving services available to people affected by genetic conditions. Politicians and the general public may not be aware - or may only be partly aware - of the issues faced by people affected by genetic conditions, the sorts of services they need, and what services are available. Teachers, leisure activity organizers and health professionals may also not be aware of the issues and problems.

People affected by genetic conditions (such as Down Syndrome) are often well informed about the condition in their life, and know first-hand what it means to be affected by that condition. We are also aware of the individual needs of the person with the genetic condition and how the condition impacts on daily life. This means we are well placed to advocate on issues that affect us, our child and/or the person we love who has a genetic condition.

This article is about advocacy, and how we can effectively advocate.

What is advocacy?

Last year we did a quick poll around the GSNV committee table as to what 'advocacy' means to us. Most of our committee members are either people with genetic conditions themselves, are parents of someone with a genetic condition, or represent a support group. Our answers were therefore very practical:

All the points above are examples of advocacy. But what is it?

One author said advocacy was "to stand beside" (1) while another defined advocacy as "helping yourself or somebody else to acquire increased control over you/their own life" (2). It's also about raising awareness of the issues so that they may be addressed.

Having someone advocate for us

Sometimes we need or want someone "to stand beside" us (3), to advocate for us. We may invite the Down Syndrome Association to speak at the school, ask the GSNV to address an issue facing people with a range of genetic conditions, or perhaps simply asking a friend to come to an appointment as a witness and an extra set of ears.

There are several agencies that can advocate on our behalf including the Down Syndrome Association, GSNV, VALID (Victorian Advocacy League for Individuals with a Disability), and the Association of Children with a Disability. Each has its own specialty, so check to see which is best placed to address the issue at hand.

What can I do?

There are a lot of ways in which we can act as our own advocates, or as our children's advocates. It might be as simple as making a phone call to the school or a sporting club, or providing filling in a feedback form. Or perhaps speaking with the person in charge, writing a letter to the organisation, or writing to a local member of parliament.

The first step

Because others may not be aware of the issue, the first important step is to let people know that there's a problem. For example, a problem at school could be raised with the teacher or principal, or a treatment issue could be raised with the treating doctor. In many cases, a phone call or raising an issue at a meeting can be effective.

When a problem has been endured for a while, it's easy to think that "they" don't care and feel angry. However, others may simply not be aware of the problem. When the issue is brought to light, they could agree with you! This person may become a useful ally in resolving the problem.

The next steps

It's possible that the initial contact person may not have the authority to address the problem, or perhaps the problem is with that person. If this is the case, ask to speak with their supervisor, whomever is in charge, or with the person with the authority to address the issue.

If the issue still cannot be resolved, write to the Head Office or Regional Office. Copies of the letter could also be sent to the Local Member of Parliament or the relevant Minister.

Policies and Laws

Sometimes the issues relates to policy or law. A letter to a Member of Parliament may be effective as they have a responsibility to take up matters on behalf of their constituents.

Members of Parliament should send a response to each letter they receive. Some have contacted the GSNV as part of their background work, which is a positive sign that they are interested in what people say.

Issues that involve policies and laws probably affect others too. Using our collective voice can be highly effective. Organisations such as the Down Syndrome Association can help coordinate efforts on behalf of people affected by this condition. Where the issue affects people with a range of Genetic Conditions, the Genetic Support Network of Victoria is a useful ally. As the peak Victorian organisation representing people and families affected by genetic conditions and their support groups, the GSNV is able to advocate on genetic issues with a larger presence utilising our networks.

More Information

There are a number of advocacy resources. A few that were used in preparing this article are listed below. More advocacy information can be found online, or by contacting one of the agencies listed below.

Advocacy Resources

1. Through the Maze, Association of Children with a Disability,
2. Helping You & Your Family, Association of Children with a Disability,
3. To Stand Beside – The Advocacy for Inclusion Training Manual, VALID Inc.

More advocacy information can be found online, or by contacting one of the agencies listed below.