Where is the Humanity?

There was a time I knew, when people organically cared about each other. I remember a neighbourhood of friends, not neighbours.  I still have many of those friends. We still care about each other. We may not live near each other, but when times are tough, we take the time to let each other know we care, and when times are good we rejoice together. We do what is within our power to do, we always empathise.

Friendships

Empathy is something that does not seem to exist in some people, sadly, people who have the power to do good not evil, often lack that sense of empathy. Take for example the situation with Asylum Seekers here in Australia, the abuse and bombings of citizens in Syria, the withholding of Human Rights for GLBTIQ in Russia and the ensuing punishment for breach of their inhumane laws, and many, many more atrocities all around the world.

Holocaust Survivors and Remembrance Project

Some, we hear very little of they are so unbelievable. Even if we had heard an illegal or embarrassed whisper, we would be unlikely to believe it. Much like our history, The Holocaust and the many more mass executions that have taken place since WWII. Who would have believed the attacks in Syria if it weren't for this age of digital photography and media? We could not see the Holocaust during WWII, so people simply chose to not believe that human beings could be that destructive, that cruel and murderous to other human beings.

Unfortunately, that is the result of a mass mentality pushed in the direction of evil, not good.

I found this wonderful video today that I believe we all need to watch.

It talks about the evolution of human empathy. It addresses how we influence others and most importantly, it talks about where we find ourselves today.

Click here to watch, NOW.

Take the time to watch it. The second part of this post can wait for another day.

My Happy ending will be when the tipping point gains momentum and the world finds empathy again.

Ode To Empathy

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)

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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?

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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.

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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.

It's Time To Change The World

I am going to tell you right now, this post will be longer than my usual posts. It needs to be.

I need to tell you a story, a complete story, because Changing The World is not something any of us should take lightly.

This story is ultimately about a Murder that took place on the 12th of January 2013 in a town in Maryland USA, a Murder for which nobody has been held accountable because the victim was disabled, and because of his disability deemed "Already Compromised".

Here is the New York Times article.

In short, a young man, who happened to have Down syndrome, went back into a movie theatre to watch for a second time a movie he had just seen, but he did not have a ticket for a second screening.



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Due to the fashion in which security dealt with this issue, within half an hour,

Robert Ethan Saylor was dead.

The mention of Changing The World is initially in reference to my blog post written for World Down Syndrome Day 2013 where I talk about educating the people outside of the Down syndrome community, about Down syndrome (DS).

When I wrote that, I was not aware of this crime, so the extent of that post was not far reaching enough to have ever thought that I might have to consider the type of education that might prevent a death. And that, in itself, is far too big a solution to include here.

And changing the world now seems much more important!

I was however, not simply meaning education about basic facts like the medical terminology for DS is Trisomy 21, nor just that there is an extra Chromosome on the 21st pair, not just that people with DS are as different to us as they are alike, I was eluding to more relevant information. The type of information the greater community will need if they are to truly include people with DS.

What I did not say, and again, I made the error that people would know this, is that most people with DS take longer to process information, their brains work beautifully in many ways, and from my experience, they are usually great problem solvers and make wonderful Personal Assistants, as once they grasp a concept or an idea or a memory, they rarely forget; but they need a bit more time to learn, to consider and process a conversation or instruction, or to think about their own response.

What does that mean to us? How can we be more inclusive in this type of situation?

When I speak to my son, who has DS, I have to be more patient, I need to wait, to give him time to think about what I have said, to process that information before he will respond or react to what I have said.
Time that Robert Ethan Saylor was not given.

Most people with DS have difficulty with what is called "Transition", which is simply moving from one task to another or even one place to another.  Not only is the processing time for the change a consideration but they want to know what next? Which comes down to a difficulty with scheduling or planning, so I often use visual communications such as signs or photos, as people with DS learn very well via visual methods, as do many other people.

Again, what does that mean to us? How can we be more inclusive in these situations?

Taking time is of the essence, ensure the person with DS understands that the time has come to move on from the task at hand and be sure they understand what is next.
An understanding Robert Ethan Saylor was not afforded.

Now tell me, how are these courtesies any different (other than it may take a little longer) to what you would expect for yourself? We demand the rights we feel we deserve as Human Beings, and so those should carry over for all Human Beings.

We use the word INCLUSION because people with DS and other disabilities want to be included. Do we think it is enough to just "allow them to exist"? Do we not realise still, how much every person has to contribute to this world? The fact that we are all different to each other is what makes this world such a rich place.

Robert Ethan Saylor was no different to any of us,

he wanted to live.

He would have wanted to do things that he enjoyed, to be able to have a life where he could have choice, friends, spend time with family or go see the odd movie. So he did, he went with his Carer to see a movie, but as a result, he is dead.

WHY?

There seems to be many reasons procedurally that Robert died, but the State's Attorney For Frederick County at the County Court House in Frederick Maryland says this in their press release:

The opinion of the Office of the Chief Medical Examiner was that a 25 year old Caucasian male, ROBERT ETHAN SAYLOR, died of ASPHYXIA, Down's Syndrome, Obesity, Atherosclerotic Cardiovascular Disease and Accessory Conduction Pathways of Heart are also significant conditions ... This individual was already compromised by his Down's Syndrome, obesity, body habitus, and heart disease, making him more susceptible to sudden death in stressful conditions which would compromise his breathing. Using the medical definition of homicide (but for the actions of other individuals Mr. Saylor would not have died), the manner of death is best certified as HOMICIDE.

And AGAIN, I ask, What does this mean to us?

Firstly, it means Robert died as a result of other people's actions!

Secondly, YOU CANNOT DIE SIMPLY BY HAVING DOWN SYNDROME!

Thirdly, Robert had Down syndrome NOT Down's Syndrome (but you would think a Medical Examiner would know that).

Finally, AND THIS IS THE PART YOU WILL BE INTERESTED IN, all the medical conditions mentioned above, as with any of the characteristics of DS, can be found in the general population. They are not unique to a person with DS.

In short, this could have been your Son, Daughter, Mother, Father, Uncle or Aunt who just happens to have similar health problems, who may have simply been confused or maybe didn't understand the request made of them, maybe their English language skills were not so good, maybe they had difficulty hearing ... this could have been anyone.  The fact that Robert had DS is completely irrelevant given the methods used to remove him from the Cinema, and yet, his death is being blamed on him having Down syndrome.

Had anyone else with similar medical conditions been hog tied with three sets of hand cuffs and left to lie on the floor face down in a panicked state, they could have also died, but their death would NOT have been blamed on Down syndrome! In fact there are many incidents previously of people who have died in similar situations at the hands of others, who did not have DS.

My heart breaks for Robert, for his family and friends and for the community that had embraced him, as I hope one day will be the experience my son can fondly look forward to, but to ensure complete inclusion, we must continue to fight for the rights of those who need our support.  We must also fight for justice for Robert and ultimately ANY person who might find themselves in that same situation.

Down Syndrome Uprising has also written about this story and have started this petition.  Please sign it, take a stand for Robert and Human Rights!



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As I am in Australia, I am not sure what else I can do, but to show my support from afar which hopefully makes this an Internationally supported incident and in the hope that may help keep the fight for justice for Robert and Human Rights going world wide.

WHAT CAN YOU DO?

This link will take you to information outlining what you can do!

DO IT NOW ...

There have been many people write about this tragedy, people who are parents of children with DS just like me. People who are articulate and who write heart felt words like these Make World Down Syndrome Day a Day of ACTION, Death by Down syndrome, We Stand in Solidarity, Abuse (and Murder) of People with Special Needs Has To Stop! and this The Sound of Terror.

You will excuse me if I cannot find a Happy Ending in this post, however, if Robert's killers are brought to justice, that would do it for me.

The hope of a secure and livable world lies with disciplined nonconformists
who are dedicated to justice, peace and brotherhood.
Martin Luther King, Jr.

Losing My Religion - Jimmy Carter

I had not planned this post, but could not let it ride after discovering this very powerful piece that was published in The Age today ...

Losing my religion, for equality - Jimmy Carter

It is an absolute MUST READ for all, not just Women, so ... tell a friend!

There’s more to the Boob than meets the eye …

In this latest climate of Human Rights, and in relation to where Babies have a right to eat, I have found myself becoming very involved in a debate around Breastfeeding, which really has never had much relevance in my life!  Why? I ask myself am I drawn to this?
At first I thought it was just simply the annoyance of the fact that legislation already exists to allow Mothers to Breastfeed where and when they need to, which you can read here, therefore,  it is not a debate that should be had at all! It is legal. So that's that … RIGHT?

So what is it that has piqued my interest on this one?

After reading the  "SEX DISCRIMINATION ACT 1984 - SECT 7AA", the issue for me lay in the fact that the point is being missed!

It is actually ILLEGAL to discriminate against a Mother who is feeding her child in a public place, in which she is entitled to be with or without a baby.  The debate has been about the Mums "offending others" where in fact, legally, the onus is the other way around!

If a woman is sitting by a pool, or at a Cafe', or in the line at Coles, as long as the only other thing she is doing is Breastfeeding (other than using the facilities in each place legally) then she is to be treated equally as any other person in those places doing the same things.  Unless any of those people are committing a crime.

So, it seems it comes down to the spectator. Which then raised the question for me ... Is there more to the Boob than meets the eye?

The fact is, History shows people are attracted to look at things that are different, hell, they used to pay money to go to travelling shows to see things that were different! (We still do, in less inhumane ways.) What is it about having to look?

I have a son who happens to have Down syndrome, so I can tell you a little of people having to look. Down syndrome, for those who are unaware, brings with it a range of characteristics, some physical and quite obvious, some intellectual and not so obvious. There are also some behaviours that are of higher incidence in people who have Down syndrome.  One such behaviour is what is referred to as "Self Talk" or "Monologuing". 

BORING ALERT - SORRY SOME TECHNICAL INFORMATION. Self Talk for people with Down syndrome (and sometimes people without) actually serves several purposes.  When LJ talks to himself it can be because he is trying to engage with the people around him (get attention), he can be acting out a scene from a DVD he has just watched, he can be trying to process or make sense of a situation that may have occurred by recounting it or he may simply be bored and trying to entertain himself. BORING STUFF FINISHED.

Makes sense when you spell it our like that RIGHT??? But if you are at the Pool, or in a Cafe' or standing in the line at Coles and you saw this, you would stare or you would be trying NOT to stare, because it is different, it is something you are not used to seeing, you would be wondering "What is wrong with that kid?", "Is he OK?" you may even become a little distressed yourself.  Sadly, it is also extremely apparent by some of the comments that have been made to me, it is offensive to some people and I should try to "tone it down". Well I can tell you ... I AM OFFENDED EVERY TIME SOMEONE STARES AT MY CHILD BUT THERE IS NO LEGISLATION TO PREVENT THAT!

Now as I say, LJ has some apparent physical characteristics that make it very quickly obvious he has a disability ... What if this was a child who has Autism and was having a sensory response to their environment? (Which could be mistaken for a tantrum) What if this was a child with Epilepsy and he was fitting? (Also could be mistaken for a tantrum) What if this was a teenager with his undies hanging out of the top of his pants that were around his knees? (Possibly be mistaken as a tantrum) What if this was a boy child dressed as a girl? Or a Mother Breastfeeding? These are all things that some people will not have seen before and may find a bit odd, unsettling, strange etc., describe it as you may, but these situations are not a grand plan to make you feel that way! If that is what you think, dillusional is a word that comes to mind.

If you are seeing something you don't see everyday, it may well be a bit unsettling as it is unfamiliar or you may simply not understand it (particularly the teenage pants thing?), but it does not mean we have the right to SUGGEST CHANGE or CHANGE anything about any of these situations, because none of these people are breaking the law ... and if you feel you must intervene, then you are being discriminatory. You must give them the same legal right to be as you are in public ... left to your own devices, unless you are breaking the law. Looking at them with a disapproving or a disgusted look on your face will not help either ... THAT to the guy in Coles the other week!

THERE IS SOMETHING YOU COULD DO: You might try being considerate! You could offer some reassurance to the parent of the fitting child, you could offer to hold the groceries of the parent of the child with Autism while they soothe their child, you could even offer to shield the Mother who is Breastfeeding so to give HER SOME PRIVACY! None of which may be required, but you could try to be kind.

When did our standards get to the point where our own well being was based on how strangers conduct themselves in their own attempts to get about their day? Are we that shallow that we have no consideration of people's differences? Well it seems we are, that is why we need ANTI DISCRIMINATION laws to guide us.

Our standards should be about how WE behave, the example WE set our kids.

Be more sensitive to others, embrace differences, offer your support or walk away if you can't or won't help.  Don't hang around to tell someone what they are doing wrong (by your standards) or how it offended you or what they can do next time so it does not offend you.

People are just trying to get on with managing their day based on their own set of circumstances and who they are (Homeless, Disabled, GLBTIQ, Working, Unemployed, Carer, Australian, NESB Australians, Indigenous Australian, Man, Woman, Mother, Father, Child etc *), just the same as you.

A little Consideration, a little Thought for Others, makes all the difference.
A. A. Milne (Winnie-The-Pooh)

Let's commit to making a positive contribution, or getting out of the way so someone else can ...

Sounds like another Happy Ending to me!

What have you done to support a person who just needed a helping hand?

* My apologies for any incorrect terminology or omissions - feel free to add or correct in the comments if you wish to.

Warmest regards,

Sandra xo

Justice for Women

Today is the first day of the rest of my life!

A statement that I am sure will be familiar to most ... A statement that I thought would mean, I knew what I would do next. As it turns out, for me, it is quite the opposite.

In the past I have spent so much of my time planning my behaviour, shielding people from the me that I have been bursting at the seams to be, so I sometimes forget to, well, "Just Do It", another catch phrase that will be well known lol.

I forget to simply be me. So today I got on with the last of the unpacking, the fall out of our recent house move, I got on with preparing meals for the week, I got on with tidying the house and I finally sat down with some left over shortbread and a home made cappuccino to check out the 'goings on' on Twitter ...

I had been so caught up in the stuff I had needed to do in the last couple of weeks (including celebrate with my kids the coming and going of a wonderful Christmas and the wonder of the coming in of a New Year) that I had not really paid much attention to those things external to my world.

And there it was ... the mention of a 23 year old girl in India, who had died as a result of the injuries she received during what can only be described as the most brutal gang rape I have ever heard of outside of Australia.

In Australia recently, we all grieved the loss of Jill Meagher, her death incited a nation because of the lack of safety in our streets and the continued crimes against women. Jill was raped and murdered by one man, does that make it not so bad? HELL NO!!!

Crimes against women can be found happening every day. Crimes that have been happening since the beginning of time. We can go back to our own horrific history and find names such as Anita Cobby, Janine Balding, Virginia Morse, Ebony Simpson and the list goes on.  Brutal, rapes and/or murders. Crimes against "the fairer sex".

We can analyse these crimes until we are exhausted, but there is NO good reason for them. Does that mean however, we must live in a world of hate for these perpetrators? (not all men by the way), does it mean we should become immune to the occurrence of these crimes and accept this is our history and therefore our future?

As a group, a species, a race (the human race that is), we have become far too numb to the crime that continues to take place on a daily basis in our world, our country, our state, our suburb and yes, sadly, sometimes in our homes.

We can argue we have become desensitised because of video games, it is because the news is so graphic now, the police shows we see every night on TV depict crime in such detail with their special effects that we have all come to accept these events as being a part of life, and nobody is shocked (when we should be).

We can try to guess what brings people to the place where they are capable of such crimes ... bad luck, bad breeding, no love, no discipline, mental health, drugs, alcohol, culture, etc., but we may never know, each one being so different.

When it comes down to it, I personally can't feel anything for these perpetrators. I don't hate them, I don't pity them, I don't understand them nor do I try to, nor do I want to.

I do feel compassion, love, heartbreak, sorrow and a feeling of complete helplessness to make the families of the victims feel any better, to speed their healing, to bring back their loved one, to assure them, it won't happen again, to turn back the hands of time and make it so the crime that came to their home, place of work, neighbourhood had never happened.

In the absence of magical powers, we have what is called a Justice System (well at least we do in this country) and it was this system precisely that called for public silence when Jill Meagher was killed so as to not hinder due process in the fair trial of her alleged rapist and murderer, for fear he would not be jailed.

It was with great restraint that a nation that was steaming mad, refrained from any further public comment and laid quiet, so the Justice system can do it's work. Let's pray it does.

In India, the law is not as advanced as ours is, particularly in the protection of women.

So what do we do?  We are obviously in a state of turmoil about this crime, it is in our news, it is being discussed in our social media and at times with great passion.

We do not hate the men (unless you feel you need to), we cannot judge them (unless you think you know them), but we can call for Justice, we can call for them to be held accountable, to take responsibility for their actions, for a crime that is simply WRONG and there is absolutely NO EXCUSE for; no reason in the world that can make what they did acceptable by ANY human being upon another!

I also found on Twitter tonight a Petition ... think of Petitions what you may, but beyond this blog post, I felt it was the only other thing I could do, so I have signed it; I hope you will too!
(Click on the following link and fill in your details)

http://www.change.org/en-IN/petitions/president-cji-stop-rape-now?utm_campaign=action_box&utm_medium=twitter&utm_source=share_petition

The only Happy Ending we can hope for with this, is that we can somehow make a change.

Change that will bring us all closer together as people, change that may one day mean crimes like this do actually shock us and cause us to come together as one to demand it never happens again.

What would you like to see done to bring about change and justice?