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This is the story of the first real advocacy campaign I ran, and of my first advocacy teacher, Faye.

Faye was a woman with ‘severe and multiple disabilities’ and lived with a disability service provider at that time on the very cusp of transforming from one of those old ‘whole of life’ services – congregate care, registered nurse on site 24 hours, accommodation. Day centre, all your life in one neat, secluded package. Many staff were still firmly back in those ‘old days’.

Her communication was very limited, only a picture pointing board. I had met her when I worked for this organisation and our friendship became strong, so we spent time together even after I stopped working there.

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ADVOCACY SITUATION

One time when we were out we passed by her doctor’s office. She indicated she wanted to see the doctor. I knew staff at her accommodation were supposed to do that and I didn’t want trouble. So I told her I would tell staff she wanted to see the doctor.

I did so when we returned and the staff followed procedure. They wrote up a referral and put it in the pigeonhole used by the registered nurse so she could action it.

Sounds good?

Except they knew, and I knew, that the nurse was on long service leave, would not be back for two months and was not being replaced for that time.

So the referral about current pain would be sitting unread for 10 weeks.

But they said that’s what the rules said, so I, not wanting to make a fuss just kept quiet.

Until the next time we were down the street when Faye  pointed to the doctors office and strongly indicated she wished to attend.

[Lesson One: Choose a side and stick to it]

I was conflict adverse, and earnestly her asked to wait and tell staff but she was adamant, and reported pain.

I knew I could do what the staff wanted, and Faye would suffer or do what Faye wanted and the staff would be unhappy.

I decided I was on her side, not the staff’s. And that they had decided there were two sides, not me or Faye. The formal description of this principle is ‘Advocacy is a partisan activity’.

An advocate is on the client’s side. There are other people in the process who consider the views and rights of organisations, or who act as mediators. When the judge asks for a plea, you don’t expect your legal advocate to say ‘Well, Your Honour, he says he’s innocent, but I reckon he did it, so the plea is Guilty as Charged.’

So we went in.

When we got back I told her staff what the doctor had recommended, The direct care staff were dismissive, disapproving that she had ‘bothered’ the busy doctor.

People with disabilities had ‘poor impulse control’ they assured me and needed to be taught ‘boundaries’. claiming ‘they’ were ‘always complaining about something’ and that she had been nagging them about health and pain for months and getting ‘rude’ when they declined. I was told this was related to her disability.

In any case, I was told, if they just ignored her complaint about her health and pain, after a couple days she stopped making them, so ‘It couldn’t have been serious, could it?’

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[Lesson Two Advocacy – ‘ directions’ or ‘representative advocacy is about the goal, and the goal and methods are set by the person involved]

I was at that time that I heard that the manager wanted to talk to me about our going to the doctor but Faye would not be permitted to attend.

As we’d be discussing Faye and her health I asked Fayeif it was OK to talk without her and she gave a resounding ‘NO!’

So I communicated this to the manager and repeated that Faye and I would be really keen to talk about her health.

The manager refused to meet with us together, just wrote a letter saying I was not ‘allowed’ to help Faye see doctors.

The manager was angry at me, but that waasn’t important. Dealing with Faye’s issues the way Faye wanted was important.

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[Lesson Three: Get advice]

I was struggling at this point to work out under what authority the manager was making these rulings. I know Faye had no legal orders on her, and as far as I knew that meant she had the same rights as I did.

I also knew me just repeating that to the manager would be futile.

So we asked a lawyer from a disability legal centre who confirmed my understanding.

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[Lesson Four Define the issue]

At this point we talked about what was wrong, and leaving aside the (justified) emotion and moral issues, it came down to Faye not getting access to a doctor when she requested it, because the people managing her life thought, because of her disability that they knew better than she did what was right for her.

The lawyer said, absent some limited specific legal situations, everyone had the same rights and should be treated equally favourably. She said what was happening to Faye was discrimination.

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[Lesson Five: Use the laws]

So, unable to get the manager to listen Faye, the lawyer and I discussed ways of getting Faye heard.

With Faye’s informed consent, after I ran through the risks including retribution, she and I made a disability discrimination claim. Wasn’t hard, the process was simple and the law specifically allows associates of people with disabilities to claim also.

I think there was a waiting period, as they worked through a backlog but making the claim we had options if other things did not work.

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[Lesson Six Weather the pushback]

A few days later when I visited Faye, she showed me a letter she had received. She often did this as she’d not been taught to read.

Faye’s family was applying for plenary guardianship of her.

Later when it was all sorted, the family told me that the family had been told that Faye loved the organisation and was completely happy with her health care but I was mad at the organisation for personal reasons and was manipulating her to get revenge, so the guardianship was needed to keep me away from Faye.

First part was true; I was mad at the organisation for … reasons. But my preferred response to that being angry would have been to just have nothing to do with them, which was sadly not possible given Faye’s treatment.

And as far as manipulating the most strong-willed person I know… I used to count it a victory when I managed to carry out my own decisions about myself, within our relationship – influencing her much was just not going to happen.

Luckily the lawyer we got advice from earlier was happy to work with Faye and we got lots of people to support Faye.

The hearing was held. Halfway through the family tried to withdraw the application, as they had not been told all that was involved, but that wasn’t the way it worked.

The hearing continued, the application was denied and Faye remained her own decisionmaker.

It was scary and potentially restrictive, but that comes with most advocacies and we got through it.

[Lesson Seven ‘It is almost always the cover-up rather than the event that causes trouble’.]

But not so much the manager who misled the family to initiate it. That person was caught making new statements which the family revealled as not true on the day. The quote above is from someone connected with the Watergate conspiracy investigation, Howard Baker and is very true, in my experience.

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[Lesson Eight Tactics or Choose between a steady drip and a flood]

Sometimes in an advocacy you wear down resistance by keeping up a steady targeted sequential string of interventions – like a stone worn down by individial drops of water – internal complaint, then when that does not resolve things Head Office, then if that fails, funding body, then professional association such as APHRA , then Member of Parliament, or regulatory body like Fairwork or Equal Opp, then Industry specific complaints agency like Health Services Commissioner or Chief Psychiatrist (ideally both) then local newspaper, then troll the media for a story to tack onto…

Media can be tricky but by the time you’ve reached there you should have documentation and rulings which make your complaints into a story and an idea of what the risks and benefits are. Advocacy with organisations is an asymetrical contest, and having little to lose can open up possibilities more settled folk would eschew.

And if the person the issue is affecting has family, or sympatheric professional support, or a church community who ask how they can help, they get the list above to use.

Much of the time you get halfway through someone decides to negotiate.

Other times, if something is time critical – housing loss, health risk, someone losing faith then you use a flood, you do all those things at the same time, if that is the only way to get the attention of the people who can decide.

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[Lesson Nine Look widely for synergistic opportunities]

I forget the exact timing but around this point we activated the Disability Discrimination Complaint (Our ‘turn’ had come up but we delayed while Faye’s freedom was at stake, I think) but she was sure she wanted to try everything now, given the tricks the other side just tried.

So now we pulled out all the stops. We tried local and metro media, MPs and one special thing.

We heard that the Board of the organisation had a vacancy, that the due date for nomination was almost up – and that there were no applicants! So any one nominated would be appointed unapposed.

This seemed like a pretty good way to get them to start talking so Faye applied, in time and her self nomination was accepted, and no-one else had nominated it should have resulted in her entry to the board..

But after it was accepted and someone realised who she was , it was apparently ‘un-accepted’ (No, I didn’t know that was a ‘thing’ either.) they wouldn’t explain how, but it eventuated they were going to move a motion at their AGM in a couple weeks to cap the size of the Board and make the position Faye should have filled gone.

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[Lesson Ten ‘You can’t do that’; Well actually, we can. You may think we shouldn’t but that’s not the same thing. The only limits are one’s own morality and the law of the land. Within those boundaries what others consider ‘unwise’ , ‘not appropriate’, or ‘not really in your interest dear,’ is irrelevant.]

I was so far out of my comfort zone that it really worried me. At this point in any struggle for myself I would get depressed, discouraged and drop it. And what we were to do now, speaking in public would be just impossible for me by myself. I would be embarrassed and anxious.

But Faye was still a long way from getting heard. So we went to the AGM.

We had dozens of flyers. We tried to raise Faye’s nomination but were told we couldn’t until the cap motion was decided.

Faye’s speech has always been severely affected by her disability. That day, when the motion was being discussed, she spoke for three minutes. No-one, including me, understood what she said but her emotion, her outrage was clear.

At this time we handed out flyers, I think I read from one while they were being handed down the crowd.

The members voted against the cap, and the chairman said he’d have consult and get back to us.

If we’d not come to the AGM, not risked scorn or embarrassment or acting ‘inappropriately’ then the Board, those respected, respectable able bodied altruists, would have passed what would be seen as a routine measure and the rights of a woman with disabilities would have been extinguished – again.

There are whole lists of options that ‘sensible people’ discard instantly, things that ‘aren’t done’ or that people might think ‘over the top.’

In real advocacy nothing legal and moral can be discarded as an option.

Jumping to any other managers or executives in an organisation where the reception might be warmer with the hope of lateral advocacy, forming alliances or interest groups to convert individual issue to common ones, outside what a manager might think of as ‘appropriate’, taking a local issue to the International Court of Justice, contacting media, picketing agencies, printing and wearing protest shirts. contacting MPs, joining organisations and speaking up at AGMs, standing on the street and collecting signatures for a petition, staging a rally combined with an appealing photo op… if it ain’t illegal or immoral (by your lights) then it’s on the list of ‘Consider these if they’re still not listening’,

Some have costs, and these must be balanced with the urgency of the advocacy need and the effect on relationships, but they are options, and ‘on the table.’

I’ve seen all these used and used many myself.

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[Lesson Eleven Find the level of management/control who has the authority to make change and who cares about the organisation’s reputation]

All our antics had achieved the goal. The organisation for the first time started talking to Faye. The negotiator we saw now had the right mandate. He reported it as ‘The Chairman told me to just fix it, do what I needed to get you to stop making trouble.’

Hardly a ‘road to Damascus’ insight into the error of their ways that you’d want ideally, but we took it.

So he fixed it, dealling with our Disability Discrimination claim, Faye’s health, the organisations’s refusal to talk to us together – the whole lot.

The manager was moved to another centre across town, rules were made and promulgated about my friend being able to get health care on request and a protocol for family and friends consultation when she requested it.

LESSONS

What were the broader lessons I learned?

I also learned that this sort of individial support for the human rights of people the world has decided don’t matter was a pursuit I was willing to devote my life to following.

And I’ve even managed, on occasion, to believe I am worth fighting for too and do some ‘self-advocacy’.

And I wouldn’t have lasted, I wouldn’t have seen the result we achieved, wouldn’t have believed this stuff was possible without Faye, my teacher, my friend and my ‘Thousandth Man’ as Kipling put it, with me and pushing me all the way.

Rest In Light F.A.M.

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