By: Steph Cantrill, with Liz Telford 

 

As many people know all too well, navigating the health system and getting the right treatment isn’t always easy. This is especially true if you have a complex condition that many health professionals know little about, such as Late Effects of Polio or Post-Polio Syndrome.

This is where advocacy comes in. We’re going to share a bit about a particular type known as self-advocacy, based on information Liz Telford OAM shared with us in a recent webinar.

What is Self-Advocacy?

As the name suggests, the term “self-advocacy” means speaking up for yourself. And it’s not just about health – we can advocate for ourselves in any situation that involves dealing with other people.

With self-advocacy, we might be:

• speaking up about a particular situation in which we feel we’ve been misunderstood;
• asking for something to be changed; or
• seeking respect, dignity or a better service.

What do we need to know to be our own advocates?

Firstly, it helps to know our rights. To learn about your rights, you can go to a formal document such as the Convention on the Rights of Persons with Disabilities. Liz referred to a number of rights in her webinar. For example, you have the right to:

• participate, and have the best health care
• feel good about your care
• ask questions
• make mistakes
• change your mind
• have an opinion, and disagree with someone else’s opinion
• do less
• say no
• feel angry
• be happy

 

Another thing we need to know is what we want – and what we need. We should keep in mind how we want to be treated in our healthcare interactions, and what we need to do to ensure that we get the treatment we deserve. Is my health service helping me to achieve my own goals and working with my priorities? Am I being respected?

Next, we need to know who to talk to. When you’re not happy with the treatment you’re getting, sometimes the best person to talk to is the person in front of you – the one providing the treatment. Sometimes, it’s better to talk to their supervisor or another person with influence over the situation.

In order to advocate for ourselves in this way, it’s also important to know ourselves. Am I good at speaking off-the-cuff, or is that stressful for me? Do I tend to feel anxious when I’m telling people how I feel? Does it help me to feel more confident if I take a deep breath and smile before I talk? What other strategies have worked to help me manage anxiety?

Remember that assertive communication can be learned, but it’s still important to know yourself and how you work best.

Assertiveness and self-advocacy

Assertive communication is not aggressive. Being assertive is not about getting into a fight. Instead, it’s about being respectful and positive towards the other person – and expecting and seeking respect from them as well. Rather than escalating a situation, assertiveness minimises conflict.

Of course, being assertive and communicating your needs isn’t always easy. And some things can make it more difficult. For example, many people who had polio as children were taught to just cooperate and be a “good patient.” You may have been told that the doctor is very busy and you mustn’t put them out, or to just be grateful for what you’re getting.

Even now, the way the health system is set up can be challenging. There can be an apparent hierarchy in the workforce, leading us to be hesitant about taking up “important” people’s time. Or it might appear that everyone is very busy and won’t have the time to listen to our concerns.

Here are some tips for assertive communication:

• Express yourself in a positive way and treat the other person with respect, despite the power system that might seem to put you at a disadvantage.
• Tell them how you see the situation.
• Use “I” statements (“I feel…” rather than “you are being…”).
• Use direct language, so it is clear what you need.
• Remember: you can’t control another person’s behaviour, only your own. Keep in mind that every health professional you work with is human – they might be stressed and overworked, or they might be having a bad day because of something in their personal life.
• Try to work together with your health professional as a team, and discuss your priorities.
• Write your questions or concerns down in advance.
• Use resources to help explain your condition and what you need – but don’t overload them with stacks of paperwork to read!

Other advocacy

If you have tried to talk to the appropriate person but need to take your complaint further, you can go to the health ombudsman or complaints commission in your state.

If you just don’t think self-advocacy is going to be enough, or if you don’t want to go it alone in advocating for your needs, there are some options:

Individual advocacy

• Having someone speak for you (not about you) can help to get your message across.
• An individual advocate can be a trusted friend or family member, or someone from an advocacy service.
• To find an advocate in your area, you can try the Advocacy Finder.

 

Systemic advocacy

• This is advocacy on a larger scale, calling for long-term social or policy change.
• Your state network, Polio Australia, and many other disability organisations are involved in systemic advocacy.

 

Do nothing

• This is an option! You don’t always have to take issues on.

 

Examples

During the webinar, Liz gave us some great examples of speaking up for your needs and rights. Here are a few:

To an anaesthetist:

• I know that you have a tight schedule but would appreciate it if you would take a few minutes to read this information from PA and give me your thoughts as to how it relates to my surgery.

 

To a specialist:

• At our last consultation I left feeling very rushed and with unanswered questions, so I have written these down to discuss with you.

 

To an OT:

• I am not clear on the reasons you are suggesting this equipment and how they fit with my priorities?

 

To the head nurse in a hospital:

• I’d like to talk to you about my difficulty in getting assistance. I know you have many patients, but I cannot get out of bed unassisted, and I have been left for too long today. Can we talk about what is a reasonable expectation?

 

And remember – you have the right to ask for what you want and need. Communicate directly, clearly and respectfully. Where needed, use available resources to inform health professionals about your post-polio or other conditions. And let’s all get the treatment we need and deserve!