Sunday, 29 September 2013

Raising Awareness Is NOT Enough!

I need to point out that this post was written quite some time ago and has been sitting as a draft, which I have now finally finished. And here it is.

After briefly hearing Ita Buttrose speak on TV about Dementia and Dementia Awareness in her role as Alzheimer Australia's National President, I found what she was saying to be very familiar.

Ita was talking about raising awareness and was responding to a question of funding.  The question was about where do we get the money? A good question.

Ita is an extremely intelligent and thoughtful woman and I have a great deal of respect for her and the way she has lived her life so I was not at all surprised to find her response to be something along these lines ... (not in quotations or italics because this is from my memory - not her words at all).

No we can't go asking the Government for money for everything, there is only so much money available in the pot. This needs to be a community initiative. The whole idea of awareness is to involve the community who at large are the ones we are asking to support our people with Dementia. (End of my recollection of Ita's words)

Awareness is awareness.  It doesn't matter if you are talking about Dementia, Autism, Variable Religious Beliefs, Down syndrome, Gay, Lesbian, Bisexual, Transgender, Intersex, Muscular Dystrophy, Heart Attacks, Depression, Diabetes any difference.

That is all it is about. People's differences. When we have differences, our needs are different, when it comes to interacting within a community, that can mean we need to do it differently. Or is it that other people need to interact with us differently?

When I interact within my community, I communicate by voice, I speak. I also listen. There are days that I can go about my whole day without having to speak except to say thank you as I pass through a check out.

On the odd occasion I find myself having to ask a question about a product or a location and because I can speak and hear, that is easy for me to do, given the people I am approaching can also speak and hear.

What if I could not speak?

Think of your day just going about your grocery shopping, getting petrol, paying bills, making phone calls, going to collect kids from school and taking them to their after school activities.

How different would that be, if you could not speak?

How would you cope?

Yes, I know you could write down what you wanted to say, but what if the person you were trying to communicate with, couldn't read?

Yes, I know, there are all sorts of augmentative communication methods available now, but what if you approached someone that did not recognise the device you were using and just thought you were trying to sell something, therefore not giving you the time of day? Or, they just didn't have the time to deal with that difference in the way you need to communicate in that moment?

What if your speech was not very clear and you had an intellectual delay and you asked a stranger for assistance?

What if you were deaf and your speech was not clear and you had an intellectual delay and you needed to ask a stranger for help?

What if you were in a wheel chair and you had no intellectual delay, but your speech was very slurred and you were difficult to understand and you had to ask a stranger for help?

What ... If you were having a Heart Attack and you looked like a drunk stumbling around, bodily functions out of control and you could not speak because you were unable to draw a breath? Do you think anyone would stop?

What if you were dizzy and losing consciousness because your sugar levels were way out and all you needed to do was let one person know what was happening to you before you blacked out completely? How many people would listen?

What if you simply looked different? You had a scar on your face, you wear very strong thick eye glasses, you looked unlike a man or a woman, you were very tall or very short, your levels of hygiene might not be up to that which is considered "normal"? Would anyone say hello or smile at you?

What if you needed a safe place to sit for a moment because you were being bullied and/or harassed and you were feeling unsafe or unsure just because you were different? How many people would sit with you?

What if you were lost and completely disoriented because you were out of your normal comfort zone and your ability to work outside of a routine or familiar sequence was limited or you were feeling anxious? How many people would know how to help you?

The reason I ask is this ... I can't get people to smile back at me on the street most of the time, much less have them converse with me and I don't want anything from them, just a simple exchange of pleasantries!

The reason we ask for awareness is so that our people with a difference can be supported within the community which they have a legal right to be a part of for as long as they choose to. The sad part is, that legislating for these things cannot change people's attitudes, neither can funding to "Make People Aware". People only want to learn that which is of interest to them and relevant to their own lives!

Integration, support, inclusion ... these all need community INVOLVEMENT AND PARTICIPATION, not simply awareness. 

Awareness is surely a part of it, if we know the needs of others, we can be prepared, but the issue is really, finding the people who want to be inclusive, supportive and active in the integration process.

Unless you know someone who is what society considers to be different, then you have no need or inclination to be active in this support process and making it law does nothing to inspire people to want to be involved.

Anti Discrimination laws have been helpful in litigating after the fact, but the real fact is, discrimination is still alive and well. If it weren't, we wouldn't need the laws!

It should not come down to legal rights, or funding, it is about HUMAN RIGHTS.

Every individual person, no matter how you interpret them, or misunderstand them, or even if you are completely ignorant of their difference, still has a right to choose to be a part of a community.

The reason we find it so difficult to make this happen however, is because there are so many differences.

For most people is it hard enough to live with their own differences.  For some, their differences don't limit them physically or intellectually. Often their limitations are external to them in the form of bigotry from others,  but for many, the physical and mental stresses of surviving with their differences makes it difficult to be a part of a community that does not support their differences.

We hear the cries of ... But we have disabled parking spots! We have special seating at entertainment venues and there are ramps everywhere now! Even those "travelator" things are replacing escalators everywhere!

And, don't get me wrong, that's great! And that covers the mobility needs of the people who need wheelchairs. Whoopee!

That is one group of people who seek inclusive support, it is actually a token attempt at inclusion.

And how is it inclusive if a person in a wheel chair has to sit in the specially allocated spots for wheelchairs with all the other people in wheelchairs and can't sit with the friend they came to the concert with?  THAT is actually segregation!

Like Ita Butttrose, I ask for Community Interest, Community Action and most of all, Community Inclusion.  If that means Educating people and raising Awareness, then so be it.

But who will commit, which one of you would be capable, understanding, time rich enough to take the time out of your own day to stop and redirect your thoughts, your habits, your instincts, your schedule to actually physically include someone who has a difference?

Who will be that community?

"Inclusion is not a strategy to help people fit into the systems and structures which exist in our societies;
 it is about transforming those systems and structures to make it better for everyone.

Inclusion is about creating a better world for everyone."

Diane Richler, President, Inclusion International

And even as I hit "publish" I realised this post does not include all areas that require inclusion.

We are such a diverse world, and ALL people deserve equality and access.

Thursday, 26 September 2013

What I've learnt recently

A few things have happened lately which have meant I have had to do heaps of research.

All related to my kids of course.

Although, I must say, I have also made some decisions about my own future. At least for me it was a simple case of heading off to see the Careers Counsellor at TAFE and I had all the information I needed. Quite simple really.

With LJ things are not always that simple.  Not only is he a robust, rough and tumble nearly 11 year old, but he has Down syndrome (DS).  Behaviour, they say, is always communication. Unfortunately, I am not the best interpreter.  I feel like I am in a constant game of Charades.

I have read books, essays, other parents accounts and anything else I could get my hands on, so now I am turning to the DS community.  I have sought out the ear of parents who have gone before me, who have older children or adult children in the hope they will be able to drop some pearl of wisdom in my lap so that I can get on with the doing and less of the searching.

As for MJ, if only it was behaviour.  Well, not that some of it isn't, he is a teenager after all and what would a typical 16.5 year old be without that bit of attitude that signals the developmental stage they are at. That horrid stage of not quite being an adult and still being a child in many ways too.  I remember that period of my life, and mostly, what I do remember about it was that I just wanted it to pass. It is when we are coming to the point in life where we start to get to know ourselves as someone other than our parent's children, understanding much of what we could not have known before and trying to make sense of it all.

I am therefore in a state of gratitude daily that MJ is less like me than I can ever have hoped for. He is an independent person who has his head screwed on the right way and while he is still experiencing many things that will shape his beliefs and life direction, he already has some fantastically insightful points of view and values that will stand him in good stead for life.

Which brings me to what I have learnt recently.

I have learnt .... I have a lot to learn.

"The more I read, the more I acquire,
the more certain I am that I know nothing." 

Saturday, 21 September 2013

Life Happens

HELLO!!! I am sooooo sorry I have been AWOL.

I don't have a note to explain my blog absence, however, I may be able to shed some light on the matter in this post.

So, grab a cuppa, find a comfy seat and I will fill you in ...

Once April was over and I had blogged every day about what I was grateful for, I must admit, I was a bit blogged out.  It was hard blogging every day. Not so much finding something to blog about, but the time it takes to sit down and put that into words, particularly ones that will keep my readers hanging off the edge of their seat mildly interested. The actual blogging about gratitude however is something I want to continue with once I get myself back on track as it was very therapeutic.

The couple of posts that did follow are an indicator as to where my head was as I wrote about balance in life and a situation around my youngest son LJ and school.

So yes, I have had some challenges with LJ and school. Thankfully he is at a school where the people are so committed to their individual roles and as a team, well, I call them "The Dream Team".  You see I have had much greater challenges with LJ before in relation to school, hence, I moved him when I found the right people for the job.

Sadly, however, having the right people doesn't immediately make for the perfect environment but it does help work towards that.  NSW Department of Education is a big organisation and those who are employed within that Department are required to conform to certain policies, regulations, procedures, guidelines and budgets and although their hearts are in the right place, their values are impeccable and their ideas are at the forefront of Disability Education, they are limited as to what they can ACTUALLY do.

Lets say for now though, we have found a solution that is a great compromise even with all the barriers the Department puts in the way.

MJ has had his fair share of crisis also, although a bit too personal to share here at this time, maybe one day in the future.

What I can share is a little more boring and I am sure most of you can relate to which is, Teenager/Mother communication standards 101. Wow, I thought I knew how to deal with this, after all, I was a teenager once too you know? Lets just say this whole experience has opened my eyes to who I am now.

And then there is the debate surrounding subject selection for HSC and ATAR.  Thank dog MJ has an idea of what he is doing there; I'm lost!

The school holidays are always a test for me too.  Being a single Mum and having two kids that are always presenting me with something to keep me on my toes.  Not having any family support and no access to ongoing respite makes things a bit tedious at times like holidays.

This set of holidays just gone was a little different as I did give the local Vacation Care a try.  Once again, it is about the people you deal with.  While this organisation is a Mainstream provider, they really covered all bases to meet LJs needs.  What a great job.

We agreed on a trial of one half day each week.  LJ does attend before school care with them twice a week for about an hour these days as I now have a very part time job on those days (more about that in another post) so he had become familiar with the staff and it was a great opportunity to build on those relationships.  It was somewhat of a success and therefore gives us a base to build on for the future.

I suppose while I have been in a state of heightened anxiety, finally some of the ground work I have been doing for the last 8 years has brought about some good outcomes more recently too.

I have finally been informed that I have been approved for a Respite Package (given my complete absence of family, extended family, local friends, colleagues or associates) to provide me with any level of support. That also came about finally as a result of having the right conversation with the right person to ensure my case was being given the right level of priority.

Yes, this is all very boring. It is however, my life.

I shall leave it for now and simply mention, this was written in July 2013, so you know, it took me two months to actually hit the publish button.

The reason for that ... well, life happens. :-)