The challenges of being an advocate

photoAn advocate is a person who represents and works with a person or group of people who may need support and encouragement to exercise their rights, in order to ensure that their rights are upheld. The Health Consumers Alliance SA (HCA) Fact Sheet #2 says: Advocacy is a process to bring about change in the policies, laws and practices of influential individuals, groups and institutions including health systems and services.

The Institute for Family Advocacy and Leadership Development in Australia defines advocacy as: “… the process of standing alongside an individual who is disadvantaged and speaking out on their behalf in a way that represents the best interests of that person.

The thing that is changing especially in the area of dementia is that many of us are advocating for ourselves, no longer relying on family carers or others to do it for us. We are speaking out in real numbers around the world, telling those without dementia what it is like for us, what we want, and what services and support is missing. In the process, of course, we have been ruffling a few feathers, sometimes at home and definitely in the sector.

Having taken on the role of advocate, for myself and others diagnosed with dementia definitely has its ups and downs. From the doubters or disbelievers, who think because you can speak you can’t possibly have dementia, to those who are working in the industry but don’t want to be challenged by the notion they may need to change their clinical practice, and to those others who are advocating ‘for’ us, but don’t especially want to  hear us, it is sometimes a rough road.

The first role I held as an advocate started almost thirty years ago when someone I loved took his own life, and there was literally no services for those of us bereaved in this way. In fact back then, Adelaide led the way, and back in the 80’s, was known as the ‘global capital’ in this area, and I am proud to have been a part of it. I then began advocating for the homeless in South Australia after I stopped working about six years ago, and although I am less involved than I was then, I’m still involved. And of course, those of my regular readers know I am an advocate for people with dementia and the elderly, quite simply because I have a very vested interest in improving the services for, and care of this still very marginalised group.

Some embrace the challenges, voices and strengths of advocates in their sector, whereas some find us a threat. It is how to mange the latter of the two so that it becomes a win-win, not a ‘them – against – us’, as without the leaders on our side in the areas we are advocating, being willing to listen to us openly, change will be difficult to achieve. There needs to be transparency from all sides, or else achieving positive results, which in this case is improved outcomes for people with dementia, will be illusive.

Advocacy is not meant to be a game of power or personal profile raising, but a job to improve the care or experience of a particular group. In this case, I am a part of this group, and am unhappy about many of the supports and services, or lack thereof, for people with dementia, the main reason I continue to speak out.

What most advocates do is an emotionally and physically tough job, full of negatives and those who simply do not wish to listen, nor make changes. A year or so ago, I presented to Health Consumers Alliance SA (HCA) on my various roles as an advocate, being in the dementia, suicide grief and the homeless sectors. I have had to be reminded of the quote above from Mahatma Gandhi, as I feel like I am currently back in a the ignore/fight positions, one that we [people with dementia] were in some time ago, and I had thought we were past.

The other complication of being an advocate, is we are working from the reality of operating and functioning with numerous disabilities; we are not on the same level playing field of those we need to speak up against, or about, which makes it a much harder road for us. Expecting us to participate at the same level, is like asking disabled Olympians to run the same races of those athletes without disabilities. It is unfair. We need a fairer playing field, with proper compensation and support for our disabilities, rather than them being ignored, or worse, inadvertently used against us.

 

10 thoughts on “The challenges of being an advocate

  1. Pingback: Avere una demenza e fare attivismo: l'esperienza di Kate Swaffer -

  2. I hear you Kate. Advocating for my mother who has dementia has been unbelievably difficult. I am pitted against my brother who has legal control of her care as well as a broken system and the so-called experts who wish to maintain rather than to fix it. But standing by and watching something that is wrong is to me the same thing as doing that wrong thing. So I must advocate. No choice really.

  3. Hi Kate,
    thank you for this great article. What you and other advocates living with dementia are doing is pure sci-fi here in Italy. There is still not one advocate with dementia in the whole country! This is not only unfortunate, it is also tragic in so many ways.
    Hopefully, this situation will change soon…
    May I please translate and publish this article in Italian for my web site (novilunio.net)? As soon it is post it, I’ll send you a link for your reference.
    Ciao from Italia! xoxo

  4. Advocating for yourself I feel would be very disheartening.
    I am an advocate for my husband and am “tired” of being ignored, talked “over” and being looked at as if to say “What would you know, you are only a relative, friend or carer” .I am sick of being a nobody!

    • I hear you Joy… and huge hugs to you for your amazing effort. As you say, advocating for ourselves is also very disheartening – if you can still speak, then your doctor must be wrong – if you can’t speak, then you are ignored even more… we need a long cuppa girlfriend! x

  5. I totally agree with you Kate.

    YOu said some things I’d like to comment on …..

    ” is like asking disabled Olympians to run the same races of those athletes without disabilities. It is unfair”

    disabled olympians STILL run the same races ….. 100 metres is still 100 metres ……we just have a lower expectation of their final results. They’re not expected to run, or cycle etc, as quickly as abled competitors. It’s like the dementia situation. We are still expected to do similar things as those without dementia, just do it a bit differently. But this doesn’t help us.

    ….. and you said “We need a fairer playing field, with proper compensation and support for our disabilities, rather than them being ignored, or worse, inadvertently used against us”

    I hate the fact that some people think that they can tell others how to act and behave, as if their wants and needs don’t matter. But those people often have the power to keep the status quo and not change things to accommodate the new wishes of some of society.

    (sorry – isn’t making too much sense …. )

    • I get you, I think … what I meant by a level playing field, was more about the analogy of athletes with disabilities, competing against athletes without disabilities… we (PWD) are expected to advocate for useless and each other, with no assistance, and often no acknowledgement of the effort required to manage our disabilities. People with the power – managers, CEO’s, CE’s, Clinical nurses, doctors and other health professionals, often treat us with a complete lack of respect, and ignore our insight into our own illness, as well as our capacity… I could go on!

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