Self-Advocacy

The Basic Skills

What is self-advocacy?

Self-advocacy is speaking out or acting for yourself to address an issue or concern. It requires you to understand your needs and rights, and how to communicate them to others.

It might be a business refusing you service with a guide dog; refusing you goods or services because you don’t have a driver’s licence; refusing you insurance because you are blind; or a company which has a poorly designed website you can’t easily use because your screen reader technology can’t work with it. Most people do not mean any harm and are unaware of their legal responsibilities. Most people are also unaware of the needs of people who are blind, deafblind or have low vision. Learning to become an effective self-advocate is about educating people around you.

Some situations amount to discrimination under the Human Rights Act 1993, and you could consider lodging a complaint with the Human Rights Commission. But as well as this, there are also some things you can do to attempt to resolve the issue yourself.

No matter what the situation is, there are a number of steps you can take to help address the problem effectively for yourself.

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Key parts to becoming an effective self-advocate

Knowledge is the key to self-advocacy. Like anything else, the more you know, the better you understand, and the easier it is to explain. There are three parts to becoming an effective self-advocate:

• Know yourself
  Know your skills, strengths and weaknesses. It’s important to be willing to disclose your blindness, deafblindness or low vision and to clearly articulate why something presents a barrier for you.
• Know your needs
  It is important to keep in mind, no vision and/or hearing impairment affects two people the same. It’s important to be able to clearly talk about your disability or disabilities and how it affects your daily activities, communications and social interactions. You’ll need to keep records, and you can do this by any means that works for you e.g. a voice recorder, computer, BrailleNote, smart phone, or pen and paper.
• Know how to get what you need
  Understanding your rights and how to communicate with others in a constructive way is just as important as clearly communicating your disability and individual needs. In stressful situations, it’s easy to lose your cool and come across as angry or aggressive. You are more likely to get a favourable outcome if you are calm, assertive and treat the other person or people with respect.

Network with others who are blind, deafblind or have low vision – as a source of support and useful suggestions.

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Steps in self-advocacy

There are also several steps you can take yourself to address the barrier:

• Know your rights
  The best tool to have in your kit is knowing your rights. You have rights – whether you’re a restaurant goer, a student, a traveller, or going about any other aspects of your life. Should you face barriers because of your vision or hearing impairment, these barriers can be addressed by an organisation’s equal opportunity policy, various complaints mechanisms and under disability discrimination laws.
  
• Acknowledge your reaction
  It’s very normal to feel angry, frustrated, hurt or even disgusted when you are refused service or don’t have your needs catered for. Particularly when you know that there are laws like the Human Rights Act which are supposed to prevent these things happening. The first trick in self-advocacy is to acknowledge these feelings and try to put them aside so you can take a logical approach to trying to resolve the problem. If emotions are running high, calm yourself by stopping and taking three deep breaths, assess the situation, and then decide what to do next. It sounds trite, but it really works! If you lose it, you’ll lose your negotiating power.

As an example, Ian commented:
“I used to find that I got too angry when something went wrong. My face would go red and I never seemed to be able to find the words I needed to address the situation. I now find it easier to advocate for myself. Sometimes I chat to a friend first just to make sure I am being logical and fair. I like to write down what happened and the outcome I want to achieve just to get it straight in my head first before I deal with the situation.”

• Pick your timing
  When you’re highly stressed about a situation it might not be the best time to act. At the same time, you don’t want to calm down to the point where you lose your motivation to deal with the problem. Take a moment to think about whether this is a situation you need to address now, or whether it can, and should, wait until later.
  
  For example, you might be told by a supermarket that they won’t assist you with your weekly shopping and that you should ‘have a carer with you’. Your shopping may not be urgent at that moment, but you need to do it regularly.
  
  In this instance, you could ask yourself how urgent is your shopping, and is it something you want to take up now when you are not as calm as you might be, or wait until tomorrow when you’ve slept on it and the store general manager is available for you to speak with them. Another example could be going to a restaurant in an area where there are not many restaurants open and you’re hungry, but the restaurant refuses you entry with your guide dog. In this instance you may need to eat and there may be few other options, so you may have no choice but to deal with the situation there and then.

As an example, Sarah commented:
“My partner and I went to a restaurant with my Guide Dog and were told we could not dine there because of the dog. When it was explained he was a Guide Dog and legally they could not refuse us, the waiter still refused to let us dine in the restaurant and insisted we left.”
Sarah insisted on speaking with the manager of the restaurant who apologised for his staff’s behaviour and invited them to stay.

• Identify who you need to talk to
  Identify the best person to talk with or write to about the situation. It might be the person you are dealing with at the time; a shift supervisor; or it might be the person who has made the policy which is making things difficult for you as someone who is blind, deafblind or has low vision.
  
• Prepare your approach
  Choose your battles and meter your energy! Choosing your battle is the key to maintaining the energy for good self-advocacy. There are many barriers you face not only as a person who is blind, deafblind or has low vision, but in life generally. We can’t fight every battle that crops up. We also can’t put the same level of energy into each issue we want to address. For example, if you go into a bank with a friend and a teller asks your friend, “Can she sign this form?” You might feel humiliated, annoyed or even angry. At this stage, you might either decide to leave it, because you don’t have time, or commit yourself to addressing it. If you decide to address it on the spot, you could simply ask the teller firmly but politely to please speak to you directly. If you prefer not to address it at the time, you could go away and begin the process of making a complaint and escalating it to the Banking Ombudsman. The first approach will educate the teller, you’ll stand up for yourself in real time, and you’re more likely to get a result straight away. While the second approach might deliver a systemic solution, it’s important to note that this will take much longer, involve much more effort and you may find, after all the effort of lodging the formal complaint, that you don’t get the result you wanted. It may not always be the best approach to speak out at the time; however it is often worth taking the simplest approach in the first instance.

As an example, Mohamed commented:
“At university, my lecturer did not provide me with notes in a format I could access. Rather than create a scene at the time in a full lecture theatre, I waited until after the lecture and spoke with him in his office to explain how this disadvantaged me. From then on, he always emailed me the notes.”

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Acting to address the problem

Write down what happened

• Where you were
• When it took place (noting date and time as this could be important for future steps)
• What happened
• What you said or did next (noting the content of conversations) even if on reflection you think you might have handled it differently
• Where you left things

Gather other perspectives

You could consider talking to others about what happened and their thoughts about what you might do about the situation. This could include colleagues or friends. You might find it particularly helpful to discuss your issue with another person with a vision impairment who may have encountered a similar situation. You can then reflect on whether you still want to pursue it.

Think about the outcome you want

Once you’ve talked to others and have heard some other perspectives, you need to consider and note down what you want from your self-advocacy efforts.

You might:

• simply want an apology.
• want an agreement that the policies and practices that cause the problem are to be changed or fixed.
• want the organization to receive some training about the needs of people who are blind, deafblind, or have no vision.

Try to be realistic with your thoughts about what you want

Whatever it is, you need to consider what is the very least you will accept in the event that you don’t get all you want. What you want may change as you go through the process. For example, you go into a business and encounter a completely automated queuing system, with a touch screen producing tickets with numbers and the ticket number is flashed up on a screen when it is your turn. You want to try and address this problem. You might first want to demand the business abolish the system because you as a blind person can’t use it. However, all the other customers might love it, because it makes things quicker. So you may need to try and be a bit more practical about other ways to tackle the problem. You might want, for example:

• an arrangement put in place so that when you access the business, you don’t have to make a song and dance to get served.
• the organisation to start looking at installing a queuing system that is accessible.
• the organisation not to implement such changes without consulting with people with disabilities.
• all of the above.

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