Nothing about us, without us...

Is the clarion call of the disability movement for a long time, and its as relevant today as it was in the 60's & 70's... The core of this is having the "us" to stand up and be the one to be "about"... That's about being advocates, which is what this blog is about...

I've been "commissioned" to put down what I think this is all about, so these are my thoughts, what I try and explain in a day or over the course of week to people who've volunteered for the privilege...

It's also critically important for the congenital heart community, especially those of us who are adults. Yeah, us, the other 18's the ones who pick who we vote for, sleep with and should be control of our own lives and the things that affect us.

(And I'm a very strong advocate for independent living, so everyone who wants to have a safe expression of their own identity should be allowed to do so... and when its the big questions then their input should be facilitated neutrally and without bias - and that's a hell of a skill)

So, if we're going to be involved some of us will be singled out as advocates, either because we've volunteered to fulfill a role, because we're seen to be an "expert" or (and this does happen) because we're the only one of X (in our case GUCHs) that someone can get in touch with...

The dictionary says:

ad·vo·cate (dv-kt)
tr.v. ad·vo·cat·ed, ad·vo·cat·ing, ad·vo·cates
To speak, plead, or argue in favor of. See Synonyms at support.
n. (-kt, -kt)
1. One that argues for a cause; a supporter or defender: an advocate of civil rights.
2. One that pleads in anothers behalf; an intercessor: advocates for abused children and spouses.
3. A lawyer.

I'm going to focus on argues for a cause, because that's the role I most often find myself and hence is the most comfortable in speaking about.

Lesson 1 - speak about your cause from your perspective

You can't live in someone elses head, you don't know what they're really thinking, even if they say they agree with you...

You have to say what life is like for you, and use that as counterpoint to others...

For example, I've been interviewed by walking magazines and have been honest; I enjoy walking and yes although I've been to the top of the biggest hills I have days when I have to turn back, and I have friends for who those big hills will only be a dream... Only use their name if they're happy for you to, and never ever forget you're normally talking to someone after a story...

Lesson 2 - Be Honest

Don't make out you're healthier, or less healthy, than you are.

Linked to above you can only speak from your experience, so I can only say what worries me about the possible need for future surgery, how my work & condition interact, how my diabetes and my heart interact...

Lesson 3 - Remember when you are

I'm almost 40, my surgery was a lot of years ago... Progress has happened, new techniques, better anesthetic, better post-op etc etc Schools have changed... Always be aware what happened to you might not happen to others... but that in the absence of anything else you're the best example of X that the person has right now.

Lesson 4 - Research

Some will come from books, but most will come from talking to others like you... I say talking, I mean listening, and learning... What is an ICD, which Docs would the like to see again... What are their hopes and fears (not forgetting you can't speak for them, but this adds to your counterpoint)... An extreme example, I will never know what its like to be a female GUCH whose been told she shouldn't have children, but I have listened and I have read and although I can never do that justice I can tell others that this is a real issue, and that people in this situation need support and this is the sort of thing that some have said they helped...

which nicely leads me to

Lesson 5 - If you don't know, you don't know

Just admit it... If someone asks me a medically question, then the straight answer is I'm not a doctor, ask them... No I don't know what sort of valve you should have, but I do know where others who've had valve replacements chat online, who know the ups and downs of their type and will normally be happy to share with you.

Lesson 6 - Be you

If you're an artist, draw or paint, if you're a poet write a stanza, if you're into running or walking, run or walk... You are MORE THAN A HEART CONDITION!!!! Live your life, its the only one you're going to get...

Lesson 7 - Just say no

If you don't want to, or think you're not the right person for a topic... Just say no. No need to explain, no need to apologise... You are human, remember that, and you can walk away.

Lesson 8 - Do what you're good at

If you work best looking at detail, try and do that. If you're good at presenting, try and do that. If you're good at creative stuff, try and do that... You won't always get the choice, but start with what you're good at.

Lesson 9 - Have fun

You're an advocate, a spokesperson for your "kind" that doesn't make you a pompous ass... Do have fun, you don't have to be business all the time.

Lesson 10 - Grow a thick skin

Because you are you, because you can only speak from your perspective, some people in your community will not like what you say. Sorry, it happens. And just occasionally you might have to say you're upset or you're angry... To remind people that you're you...

I've no idea if they are in the correct order, but they are in my order. In an ideal world every cause would have a collection of advocates from the broad spectrum of the cause... But not every cause does, so my plea is to be the best that you can be... accept the knocks, grow the thick skin... Because someone has to speak up, and you're the best person to do it!

TTFN

Paul

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