Fear winning makes us all losers

Well duh…

There has never ever in my mind been a question that all lives matter. That is an inviolable fact that is true regardless of gender, race, neurology, intellect, religion, or whatever classification you want to insert. I am welded to the belief that all lives matter, they matter for the very reason that they are human.

There is only one race — The Human Race. We all share that fact, that we are in fact human.

In the USA today we have a Presidential candidate who openly declares his racism and misogyny, and hatred of other. This man whips of fear. He certainly doesn’t believe that all lives matter.

In Australia, we have just elected to our senate a woman who has declared war on muslims. Calling for a closing of our borders to muslims, a ban on the building of mosques and a reassessment of all muslim refugees who have arrived since the 2008 election. This woman doesn’t believe all lives matter.

Of course it’s not the first time this hateful woman has been elected. 20 years ago she rose up also, that time Asians and Indigenous Australians were the target of her hate.

It’s not just a question of colour.

The politics of fear, of course, relies on more than just hatred and fear of different skin colour or ethnicity. What it does rely in is a an appeal to a fear of difference, a fear of other, a fear of a divergence from normal. It is so frequently seen dressed up in racial rhetoric and so-called patriotism. But, it’s far more insidious than that. It’s far more dangerous than that.

As an autistic adult I see it in the world around me when national organisations promote my way of being as disease, disorder, abnormality, and deficit. When I see national organisations provide sympathy to parents that murder and abuse their autistic children. When I see national organisations present dog training style behaviour therapy as the best-choice option to normafy children.

As a heterosexual human I see it in the hatred and bigotry of hate groups like Westborough Baptist church declaring unbridled hatred towards LGBTIQ+ people. I see it in national Christian organisations standing against marriage equality. I see it in Christian commentators refusing to even use the words marriage equality.

As a Christian human I see it in fellow believers declaring people to hell for their divergent thinking, their so-called heresies. I see it in the arrogance that leaves no room for a God bigger than we can imagine them to be.

As an Australian I see it in the politics of fear that locks people away in conditions akin to a prisoner of war camp for no other reason than claiming political asylum.

When this politics of fear rules we are so much the poorer for it. We lose. We lose in so many ways. We are impoverished by it. But the biggest loss, the most massive loss is the degradation of our humanity.

So much lost.

When fear wins, our communities become less diverse, more homogenous and we are the poorer for it.

As I have grown in Australia I have benefited so much by the experience of an increasingly diverse population. I have learned about cultural practices that never would have, I have eaten foods I would never have, I have seen clothing I never would have. These are all wonderful things, but the most important is what I have gained in the enhancement of my character, the growth of my compassion, the widening of my horizons, and the enhancement of my humanity.

If fear wins, all this is lost.

The cost is too great.

Let’s not go down that road.

In the last 20 years the autistic community has seen what happens when fear wins. Fear has had a temporary victory in the guise of the lie of vaccines causing autism.

The temporary victory of this fear has seen so much damage.

Parents wishing cancer on their child rather than them being autistic.

Autistic children murdered for their neurological make up.

Thousands of autistics having bleach enema forced upon them.

Thousands of children being exposed to preventable, life-threatening diseases in fear of a maligned neurology.

Charlatans making millions by promoting these lies.

We mustn’t give in to fear and go down that road again. Even now we still battle this lie in the autistic world. Still we have politicians, public figures and celebrities spreading this lie and breeding fear and hatred of autistic people.

We must not give in to fear and lose.

We must not let fear win.

We must fight this fear, with humanity, with compassion, with love, with acceptance.

We must not give in and resort to those same tactics of fear, hatred and bigotry.

Yes All lives matter. And that is precisely why at times we must focus our attention on particular groups, on particular minorities. Yes #BlackLivesMatter. #YesIndigenousLivesMatter. Yes #AutisticLivesMatter. But right now, in this climate of skin colour being a contributing factor to life expectancy then we must hone our focus on that point. #BlackLivesMatter.

Wonderful Work — When you can get it that is.

Get a job…

Having a job, an occupation, a vocation even is a wonderful thing when it works out. It is true that being in gainful employment is a thing that can make a person’s world feel in balance, provide a sense of healthy self and provide the financial needs of support that a person and their family requires.

Surely this is true, and it’s wonderful, when you can get it that is.

But what about the contrast of that. There are many people who are not in a position like this. There are many reasons why this is so, bad luck, discrimination, lack of access, equity, disability, and injury are some of those reasons. What about those people. What about their lives being wonderful too? Is that even a possibility?

Of course it is. But, it is made difficult by the way society treats them.

And by them I include myself, that is my disclosure I guess, that I am in that position of not holding down a position of employment.

It’s a status thing…

Western society thrives on status and a key aspect of that is employment. Being in employment provides a status that is unattainable when one is not in employment. Not only that, but, society reinforces that lack of status to people in virtually every interaction they have as they negotiate their lives on a day-to-day basis.

Just about every form one is asked to complete requests employment information in some way.

Just about every time you meet a new person you are asked what you do for work.

Access to getting a job is enhanced when you already have a job.

The media, be it print, online or screen media regularly characterises those without employment as lazy freeloaders.

These are just a few examples of how this issue manifests on a day-to-day basis.

Even going to get a haircut is a situation when one is reminded of that lack of employment status. One sits on the chair and is almost guaranteed to be asked if they have the day off work.

It’s a constant reminder that you as a person without employment are of lessor importance and status than those who do.

And it’s complete bullshit.

There are jobs there for you if you really want to work they say. You just need to lower your expectations they say.

Again that’s bullshit.

Just want to contribute…

Of course there are some people who just don’t want to work. But the reality is that these people are few and far between.

What is true is that the vast majority of people want to work, want to complete meaningful tasks and contribute to the society they live in with positive contributions.

I count myself again as one of these people.

The real issue is, in my view, that gaining employment is not about the person’s ability to do the job but their ability to negotiate and continue to negotiate a social contract. And of course it also often not about what you know but who you know.

The harsh reality is that for disabled people to gain employment it is incredibly difficult to do so. No matter what the polices of the relevant government or overseeing bodies may be, the hard truth is that employers in general don’t want to give a disabled person a chance. Due to a preconception of the value of disabled people being less than of non-disabled people.

Disabled not unable…

Within the realms of my own disability, being autistic, the vast majority of us are not employed. This is a real tragedy. It’s a tragedy for the autistic individuals involved as well as to society in general. For the individuals involved it is a human cost of difficulty in providing for oneself, maintaining positive sense of self and all that goes with that. For the broader community it is a loss of the positive and important contributions and skills that are not realised.

Personally, holding a job is extremely difficult. Not because I am not a capable human being, but because I most often discover I am unable to successfully navigate the social contracts required.

I am an intelligent and articulate person. I hold multiple University Degrees. I am a qualified Primary School Teacher, I can build a website, develop a database, create a web application. I can most likely repair or diagnose a computer issue for you. Yet I can’t manage to hold a position for any length of time.

The longest I have ever held down a position is just over 2 years. I think the reason this was possible was that my superior worked remotely.

Things need to change. I along with many other autistic people and disabled people in general have a lot to offer the world.

I don’t particularly want anything special. I do want some accommodations to make work an easier thing to manage, but I don’t want to be given a free ride or anything like that. Having these accommodations would mean really that my employer had taken the time to understand that there are things that I find easy and things that I find hard. They would understand that and work with me for the mutual benefit of a happy productive employee and more efficient, productive and profitable business.

It’s positive to see some employers learning to see the benefit autistic staff can bring to an

organisation. Specialisterne comes to mind as a group seeking to provide work options for autistic individuals. Additionally the Computer company SAP have a goal of a certain percentage of workers being autistic.

The big issue is that these initiatives are but a drop in the ocean, and that the massive issue of underemployment for disabled people is about far more than just autistic individuals.

For me having to work with people in group situations and teams is very difficult and fraught with danger of me becoming overwhelmed and unproductive.

I could of course work for myself. I have the skills to do so, of course this too is tenuous as self-management and executive function issues come into play.

In the end, I and I imagine most disabled people, just wan a fair go, a fair go to contribute to the society we inhabit and to provide for ourselves and our families.

#Black Lives Matter

Black Lives Matter

I’m not sure where it started, but the #blacklivesmatter has grown into a force in its own right. And it’s a very important issue to be sure.

I confess my first response when I read that hashtag was to think to myself but surely All Lives Matter. Yes that was my first response, it was simplistic and thankfully I have thought more about this to realise why it is so important that this campaign continues to gain momentum and strength.

I live in Australia, a country that is now very multicultural. A walk down suburban streets will testify to this with the vast array of food from a vast array of cultures. But it has not always been so. I grew up in a very white dominated culture, where to that white dominance was so strong that to question it was an almost alien idea.

It was in fact so strong that it was invisible to anyone within it.

Australia has its own, disgusting shameful history, of violence, discrimination, and genocide of indigenous and immigrant culture. We even had an official racist policy that was known as The White Australia policy.

We have made many gains forward in the years I have been alive, but, we have many more forward gains to make. The racism of this land is still present and bubbling under the surface. We see it bubble up in places at times, sometimes in political realms and sometimes in acts of violence.

In a shameful display of racism masked as patriotism we had a Prime Minister of our country allow refugees to languish on a boat as he used their plight for political gain leading into an election as he declared “We will decide who comes to our country and we will decide the manner in which they come”. In a devastating display of violent racism in 2005 we say The Cronulla Riots. And in the last couple of weeks voters have elected to our parliament a racist woman declaring war on Muslim people.

So yes all lives do matter. All lives are important, valuable and to be treated with dignity, humanity and respect. Sometimes though we need to make a point of declaring that importance to particular sections of humanity. At this time it is important to focus our attention and energy on declaring that yes Black Lives Matter.

White Privilege is real…

Many scoff at the idea of white privilege, as if it is just a political correct statement. But it is real. I as a white person am a beneficiary of it:

I will never experience an instance of wondering if I didn’t get the job because I am white

I may experience situations where as the only white person in a group I am afforded leadership simply due to being white.

These are just two simple examples of how white privilege is real. There are many more, and many will be specific to the different cultural situation they exist in.

Why highlight #BlackLivesMatter now?

It amazes me how quickly my social media feeds became cluttered with people declaring #AllLivesMatter and #BlueLivesMatter after the situation in Texas over the last few days.

Scratching the surface of these showed the white dominance and control very clearly. Quickly espoused were justifications of black deaths. Excuses or reasonings as to why these were deserved.

I ask where was the outcry at the 100’s of black deaths over months and years?

It was missing in action.

Yet, 5 white deaths and sudden outrage.

In a world where 100’s of black human people can be killed by violence and hardly a whimper is heard, but 5 white deaths create a frenzy of outrage, white privilege is clearly at issue.

Yes, we do need to highlight that black lives matter, because western society as a whole seems to be acting as if they don’t matter.

Yes, we need to highlight that black lives matter, because the disparity of life between white and black is so massive it needs to be addressed.

Do black lives matter more than white lives? Of course not.

But here’s the thing.

We already act like white lives matter!

We need to highlight that black lives matter, because society as a whole, are acting as if they don’t!

#BlackLivesMatter.

Card Declined — WTF

Aftermath

Storming back to my car, every fibre of being struggling to maintain some semblance of control of my body, control of my words and control of my action. In the driver’s seat I sit, steaming with anger, breathing, trying to maintain autonomy and an ability to not totally lose control. Already I have somewhat failed, already have I raised my voice and allowed my bodily actions to make inappropriate gestures and to knock inanimate objects from their position in the world.

As I sit and turn over the events in my mind I am conscious of many mixed emotions raging through me, of injustice, of shame, of guilt, of anger to name a few. Could it really be just a system error causing a card declined message to occur on the point of sales system?

Surely not. Surely such a small occurrence could not be a catalyst for a meltdown to occur.

Of course it’s never that final situation or circumstance that leads to such strong responses. It’s never just a card declined. Well not in my experience anyway. It’s always much more complex. It’s always that final circumstance or situation that is, as they say, the final straw. The thing that tips it over the edge.

Most often that thing that tips over the edge is a culmination of sensory overload. Of course, it’s quite difficult to see it coming, to recognise it is on its way. Suddenly it is just all too much and personal autonomy over one’s own actions becomes a severe challenge.

I find myself suddenly yelling, screaming, storming, stomping, throwing, gesturing and breaking. I don’t see it coming. I don’t even really know if I am capable of seeing it coming. What I do know is that afterwards I can analyse it and see it perfectly with 20/20 hindsight vision.

Of course, that helps not a bit at the time.

I don’t absolve myself from my behaviour. I know very well that in the throes of a meltdown I do indeed behave in unacceptable ways. The internal agony I put myself through over this is intense. No, I don’t excuse myself, however, it is a reason, an extenuating circumstance. It doesn’t excuse but it can explain.

In the above situation I had asked too much of myself, I had attempted to accomplish too much, to complete too many errands in a chunk. Not that the errands themselves were all that difficult or all that complex, in fact they were in reality quite simple and mundane. The issue was in fact the level of sensory input that I experienced in accomplishing them.

Many meltdowns can be and are averted by autistics learning there triggers, knowing what it is that is likely to be a catalyst. But, knowing the triggers is only step 1. The key is that action has to occur too. Action to remove oneself from a potential situation before the devastating meltdown is, in fact, triggered.

This is nothing new, and many autistics already are aware of this, as I am sure are many parents who care for autistics too. What can’t be known in advance of course is if that last little thing to be done will involve a trigger.

Could I have known that the card declined message would be the final straw for the day. Perhaps. My thinking at the time, I recall, as I drove to the drive-thru, was that I was a little on edge, that I needed to get home and take some refuge, recharge and recoup from the days actions.

In fact, my thinking was by grabbing something at the drive-thru that I was in fact caring for myself. What could possibly go wrong.

Card Declined.

Yes I lost it.

I lost it Big time.

I was wrong.

I was out of proportion.

But here’s the thing.

You just never know when that little thing is going to be that little thing that tips one from just coping into the land of overwhelm.

And when the land of overwhelm strikes, meltdown is a highly probable outcome.

Amidst the cacophony …

Caught in the middle…

Currently sitting amidst the cacophony of noise at a local café, surrounded by people having conversations. A bunch of people just enjoying their morning. Two friends sharing a conversation over custard tarts and a latté, two mothers conversing and passing judgement about the pros and cons of another friends choice of dog for a pet. Two young teens meet to celebrate and share breakfast together and pass gifts to each other.

I am caught in the middle of the cacophony of all this. It’s an autism thing. It’s a thing where virtually every word spoken at all the surrounding tables all enter my consciousness and assault my sensory system. What I am seemingly unable to manage is the filtering of all these conversations. Instead of just being a sense of background noise, which I can focus out and concentrate on the important thread of noise to which I am interested in, I am instead bound into every word, every buzz, every beep and shudder forcing its way into my awareness and considered.

Exhausting, is the reality of having to take into conscious consideration every sound and then make an assessment of its relevance and application to the actual situation or conversation I am engaged in. This is true even now as I sit at a table on my own typing these words, where in reality all those sounds and words are actually quite irrelevant to the task I am engaged in at this moment of writing this blog post.

The Cacophony Persists…

And so the noise continues, the effort to maintain focus must be continually employed. It is just one of those factor of life things for me. It is just a reality of how it is to live. If I want to indulge in my pleasure of a café coffee then I am must endure the environment in which that pleasure exists.

The cacophony persists, I enjoy my coffee experience and concurrently experience a level of overwhelm, a level that is unpredictable and therefore impossible to adequately prepare for. Because every time I walk into a coffee shop the ambience will be different. The number of people present, the volume of conversations and associated noises will be different. Even in the same space, at the same time, on the same day of each week.

It’s just the way it is…

Yes it is just the way it is. It is life as an actually autistic person. Living life is lived within the context of an ever-present awareness of the presences and impact of the sensory environment.

Overwhelm of my sensory system is a fact of life. It is an ever-present reality. It can’t be ignored, it can’t be dispensed with. It just is.

There is not a question of if I will experience overwhelm, it is a question of how much overwhelm I will experience in a given situation and, of course, how I am able to deal with that overwhelm. The result of this is a hyper-vigilance that is always active. Considerations of exit plans, coping strategies, communicating to others are always there.

Is it worth it?

Perhaps the most pertinent question I encounter over and again as I negotiate life is, is it worth it? Is it worth the overwhelm to do this? The question manifests itself in many different variances of is it worth it. It has many factors to be considered that have to do with myself and those I love. Sometimes it’s worth it just to make those I love happy. Even if it risks a meltdown.

As I reflect on this at this moment, I think what I really want to say, is, be prepared:

Know that you will experience overwhelm.

Know that it will be unpredictable.

Learn your own triggers.

Have an exit strategy.

Plan for communication difficulties.

Communicate your rising levels of overwhelm before it’s too late.

If all else fails be prepared to just pick up your shit and get the hell out of there.

It’s the sanctity of life

Life is precious…

That moment when all three of my children emerged into life at birth remain three of the most precious and most powerful moments I have or will ever experience. The overwhelming emotional power of these moments left me sobbing with a confusing mix of joy, wonder, happiness, apprehension, fear, responsibility and amazement. As the tears flowed down my cheeks and I gathered my baby girls into my arms for the first time I was overcome with the precious little human person I held.

Life is precious, we should protect it, we should defend it, we should do all we can to stop it being snuffed out by fear and hate. Just as we strive to stop it being snuffed out by illnesses such as cancer so we should stop it being extinguished by the disease of hate and fear and ignorance.

Scrolls of despair…

Over recent days I have scrolled my news feeds with despair as I have read of the death and destruction of 50 human persons. Destroyed by hate. So many lives destroyed. The lives snuffed out and the pain and suffering and grief of those left behind.

In the coming days, weeks and months there will be analysis, reviews, enquiries, editorials, articles and op-ed pieces written. None of that will change the hard cold fact that those human persons were slaughtered.

They were slaughtered for no other reason than who they were.

It can be debated and theorised for ever and a day as to whether or not one is born gay or not born gay. In the end who fucking cares, because gay is what a gay person is. These people were murdered for being themselves.

In despair I have scrolled as my heart has ached.

Let’s be clear, this was a hate crime. Nothing more nothing less.

The religion of the perpetrator is irrelevant.

Representatives of the God of Love preaching hate…

As a Christian the despair has been heightened by so-called Christian ministers declaring justifications and affirming the actions of this murderer as rightful and just in the eyes of God. The typical proof texts of Leviticus are trotted out as evidence that these people are apparent abominations.

But no, they are not, they are human beings. Their lives are precious and valuable and not expendable by hate in the name of God.

Quickly it was established that the killer was a muslim, and quickly the labelling of him as an Islāmic terrorist occurred.

Yes this was an act of terrorism, but it was not an act of Islamic terrorism. It was an act of terrorism against humanity.

But to be clear…

The murderer was an American citizen.

The murderer used a weapon legally obtained.

The murderer was not an illegal immigrant.

The murderer also happened to be a muslim.

This was not an act of Islamic Jihad, it was an act of mass murder in the name of hate.

It is of major concern…

A major concern to me is that as an autistic person, as a disabled person it is the actions of LGBTIQ movements that have shown the way of self-determination, acceptance and basic human rights as universal for all. There is much to be emulated by other groups in grasping similar rights and taking similar actions in gaining full acceptance in society. If when such a group is targeted by such a crime it is deemed appropriate for justifications of such hate on the basis of religion and Godly justice are made, what does this mean for other groups?

Would we hear such outcry if a slaughter of 50 businessmen in a stockholder meeting occurred, would there be any acceptance of such justifications like they were only businessmen?

What if 50 lives were slaughtered in fitness club, would we countenance justifications of but they were just fitness junkies?

Of course not, but somehow we allow justifications of oh they were only gay and it is the carrying out of god’s justice.

And what does this mean for other groups.

Imagine,

But they were only blind.

But they were only paraplegic.

But they were only ADD

But they were only Autistic

But they were only diabetic.

There is no justification for such hateful actions.

What has happened is a hate crime.

What has happened is the slaughter of LGBTIQ humans because of hate.

What happened is the slaughter of humans because of hate.

There is no justification for this. Not a faith-based one, not a justice based one. There simply isn’t.

This is simply hate. Hate allowed to fester. Hate fuelled by rhetoric.

When one group of human persons are able to be maligned, declared an abomination, declared sinful. When one group of humans is sidelined and segregated such that they have to fight for their human rights, then hate is able to fester.

It is the same ignorance and hate that gave rise to hate groups like KKK.

It is the same ignorance, fear and rhetoric of disease and defectiveness that allows abusive treatment of disabled humans.

The slaughter in Orlando must never allowed to be categorised as anything other than what it was a hate crime against LGBTIQ people by a home-grown American criminal.

We must cry out for the sanctity, value and preciousness of every human life.

There is always a plan

The plan is always there…

There are times when my life looks like absolute chaos. If you were to look at my personal space looking in it can look chaotic and totally without organisation. If you were to look at my schedule or calendar it would look as though there was no schedule or calendar. My to do list would likely be empty, my inbox overflowing, but, the reality is that there is always a plan involved, there is always organisation happening.

It’s not my ideal to have such mess and what looks like disorganisation. My ideal, my most peaceful, is everything in its place, everything neat and tidy, however it doesn’t always happen. What is true in all this is that the externals do not necessarily match the internals.

What looks like no plan, no structure and no organisation is never actually that. What is inadvertently true is that there is always a plan. It may be unpublished, it may not be articulated but it is always there.

The plan is always there, even though, at times, it is almost subconscious.

This is a reality of my autistic identity. I always have an internal plan, for a task, a day, a week, a project. Whatever it is there is a plan. I may be fully aware of that plan but also I may not be aware of it and may need help to identify it.

This is one of those things that makes living with me a challenge. It’s a huge challenge for my family and friends to cope with and work with in being in relationship with me.

I don’t know, but I suspect there is some commonality in this with other autistic people.

Stereotypically, autistics don’t like change. This is a huge generalisation and is not at all helpful in understanding how an autistic mind works. Just like the diverse nature of all human people, some autistics like change and some do not. Personally, change itself is not an issue for me, but unexpected and diversion from the plan, and being placed in a position where control over the plan is removed is incredibly difficult to deal with.

It’s not change as much as it is feeling out of control…

Whether it be the change of what’s happening during the day or diversion in the route of a trip these things are difficult for me. I find them very hard to just role with them. Certainly this can change dependent on how stressed or busy or how much is going on for me at the time.

It is my feeling that the biggest factor in all this is the feeling of losing control. Losing control of expectations and losing control of actions, and losing control of my place in the world.

As an example, in a situation of being a passenger in a car and the driver making an unplanned side trip can be so incredibly difficult for me that it can, and has at times, triggered

a full-blown meltdown.

For those that are not neurodivergent this seems an utterly unfounded and ridiculous thing to allow to happen, how ridiculous to let such a simple thing as a little diversion have such an impact.

But it does.

I have thought a lot about this. I have thought about the why and the how and what it is that impacts so strongly. I don’t know that I have an answer but I am beginning I think to work out the beginnings of one.

I am beginning to believe that it is all about lack of control or perhaps, the anxiety of feeling out of control and controlled by the choices and actions of others. I think this also ties in, at least for me, with a sense of control of physical place in space.

This, I think interacts with breaking from the schedule or plan that I am consciously or subconsciously following for the day, the task the whatever it is.

It all kind of combines together to throw me so far from the expectation that I feel so out of control and it all goes to shit and at some level the only way to reassert control is to explode. It’s not a conscious choice it is something that almost happens to me. It is something in me that I despise, that I hate, that I never want to see, ever.

But it is there, it happens, and all I seem able to do is to manage it, to minimise it.

When it happens it has an aftermath. The aftermath is a deep feeling of disgust in myself. A deep feeling of guilt and shame, a deep sense of failure. An overwhelming state of exhaustion and need to hide away and recover.

What to do about the plan…

The way I see it, is there is always a plan. How to deal with this is a two-way thing. It involves me and it involves others.

For me it is about being aware of the plan, organising the plan outwardly, be it a list or a schedule or some other way, communicating the plan to others.

If I can communicate the plan to myself and to others, and, communicate the difficulties to changes in the plan, then others can be aware that changes to the plan, without the space to re-organise the plan can be devastatingly difficult, then this is a first step to less anxiety and less lack of control.

For the part of others, well that’s for them, but I think, all I can hope for is that they can begin to understand that it is not just rigidity or hatred of change but something much more complex and that by being able to know my plan and work with me when changes are needed that we can in fact move forward together in our relationships.

In the end the plan needs to be honoured but not worshipped. It needs to be given a preference but not an unwavering servitude. The plan is there, it is important, but it is not the king of all things.

That’s what I think might work for me anyway….

Human rights are not just for the privileged

Human rights are not for sale.

It can’t be denied living in an affluent country such as the United States, Australia, New Zealand, The United Kingdom and many others is a wonderful privilege. Many of us walk around with multiple connected devices to connect us to the world, our biggest concern when selecting a place to meet can be the presence of free wi-fi. I sit myself here typing on my Macbook at a local café connected to the internet via my iPhone. It is certainly a privileged existence I am able to lead.

None of this is to diminish the reality of struggles and challenges that I and others face, whether they be as a result of neurology, illness, physical mobility or anything else. However, what I have is choice. I have the choice to freely move about my community, I have the choice to sit in my lounge room or stay in my bedroom. I have the choice to brave the world of people out there or to stay secluded in my own home.

Essentially I have much of human rights upheld. Sure, there are nuances in that, there are real issues, real challenges that I face, but overall my situation is one of privilege.

Not so for all autistic and mentally ill people. I awoke this morning to this story, in the New Zealand Herald. It is a devastating heart-rending story of an autistic man in New Zealand, for whom, human rights are a real issue.

http://c.brightcove.com/services/viewer/federated_f9?isVid=1

Watch the video, read the story. And be angry. Be disgusted. Here is a man who our so-called developed society has utterly failed. Locked up in seclusion — it may as well be called solitary confinement — in a so-called health institution.

This man locked in a room with nothing but a mattress on the floor and plastic bottle to piss into.

There is a saying that says something along the lines of how we treat our most vulnerable is a measure of how civilized our society really is. In this case the judgement can only be that we are not civilized at all. No, not one bit.

This man’s parents clearly wish they could turn back time and change their decisions, and I am sure many of us can relate to feelings like this over situations in our lives. My heart aches and breaks for them. As I read this article my heart broke, tears rolled down my cheeks and rage and anger was ignited within me.

The thing is, though, that the health authorities and so forth acknowledge that this is a totally inappropriate, unhealthy and in fact damaging place for this man to be. And yet, they wring their hands with talk of funding and resources.

I’m sorry, but you know what, that’s just a pile of bullshit.

If the authorities actually gave a shit about this man, there would not be ringing of hands, talk of funding cuts, resource limitations. There would be action. The man would be rescued, the institution held to account and the consequences to staff played out.

But no. This is not what is happening, all we see happening is talk.

All the while the politicians are driven around in their chauffeured cars, enjoying the benefits of wealth and freedom, Ashley languishes, locked up, a prisoner.

This is a crime, this treatment qualifies as torture. It is a deprivation of human rights.

We can ask ourselves how we got here, how a civilized society got to a point where this could go on for years and years, and yet the answer is staring us in the face.

This happens because:

We don’t act when disabled children are bullied.

We don’t act when schools use isolation and locking up of autistic children.

We allow human beings to be characterised broadly in society as damaged and less.

We wring our hands and have enquiries when schools put autistic kids in cages.

When peak organisations express sympathy for parents that engage in abusive acts towards disabled children.

When books titled I wish my kids had cancer are able to be published.

When falsehoods are spread about vaccines causing autism.

When so-called charities perpetuate a narrative that autism has come to destroy your life and steal your children.

It happens because all those smaller things go unchallenged, because we don’t stop it from happening, we don’t stop the bullying, we don’t counter the myths, rather we hide behind claims of everyone being entitled to their opinion.

Human rights are for all, not just the strong, but most importantly they are for the vulnerable, the weak, the sick, the outcast, and the different.

Misunderstood, misunderstandings, confusions and fallouts

When scrolling support groups, forums and blogs, one does not need to go very far to encounter autistic people being misunderstood, misunderstanding others, confusion and fallout abound. As an autistic I know I encounter it regularly from both sides, being the one misunderstanding and the one being misunderstood. It can be so very confusing, it can have fallout that are damaging and hurtful to all involved.

There are many times where I am responsible for being misunderstood, there are just as many times where I just don’t understand what is being communicated. One way I think I contribute to this is in generalisations and all-encompassing statements. For example applying We and Us to things and co-opting others that may not be a part of a situation or thought or feeling, or, saying things like always, and every time about situations and behaviours of others. These

kind of statements are big contributors to being misunderstood and creating unnecessary fallout that escalate situations, and cause pain and hurt to others.

One way I have managed to do this is to fail to be clear with my family, especially my beautiful wonderful wife, that when I write of generalisations and NT’s in a general way, I don’t actually mean all NT’s or all Allistic people. I most certainly don’t mean you my wonderful supportive family.

My wife, I believe, could be the archetype of an ally for neurodivergent people. #DifferentNotLess is what she is about in all aspects of life, relationships and behaviour. A supporter of difference and diversity whether it be physical, neurological, sexuality, gender or whatever has always been a pivotal part of how she does life. And yet due to my failures I have caused her pain and hurt through generalisations and all-encompassing terms and statements. It is a failure on my part, a failure for which I am deeply sorry.

I know for me, and I suspect other autistic and neurodivergent folk too, that it is easy to forget that we too must walk a tightrope of fine balance when it comes to our relating to others. To be aware of own differences in communicating as much as we ask others to be. To not be surprised when tone is added to things we say when none was actually there or implied. To be aware that missed non-verbal and implied communication may be the reason we have missed something, or felt offended, hurt or ridiculed at times.

I know that at times I am perceived to be being aggressive or unkind, when in my mind and as far as I am aware I am really only trying to be assertive and factual. It is an obstacle I often stumble over, and far too often fall spectacularly and in that fall manage to create fallout, hurt and pain, not just to myself but to those around me as well.

There is a tension to be considered here, especially when it comes to those we love and relate to regularly. To remember that those people especially have our best interests and well-being at heart.

The tension, I think, is balancing the calling out of ableism, the not standing for gas lighting and able splaining, the not accepting silencing and sidelining with the realisation that I get it wrong and that those that love me are more often than not looking out for me, wanting me to be the best I can be and most importantly loving and caring for me.

It’s easy for me to get this wrong and unfortunately what goes with that is me hurting those I love. I get this wrong far too often.

As an autistic, communication, social contracts, sensory sensitivities and executive function are different and diverse when compared to neurotypical people. I call on and rightly expect that the wider world should make accommodations for these rather than label them as disorder, impairment and lack, however, I too have to be prepared to make the same accommodations for the non autistics I encounter.

To be clear, there is far too little accommodation for autistic and other neurodivergent people

by neurotypical people generally, however that should not and does not provide reason or excuse for me to fail to do what I ask and expect of others. Just as the golden rule tells us. Do unto others as you would have done unto yourself.

And so, to those that I have unfairly lumped in criticism and generalisations, I am truly sorry for the misunderstandings, the confusion and the fallout.

Love doesn’t require a badge of honour…

Love without a badge.

When we love someone, there is no need for a badge of honour. There is no requirement that our love is proclaimed in such a way as to suggest it is a chore, or it is something special. No, love, is, a part of the human experience. We all love in our own ways, we love different people and things, we express it in different ways but in the end we all love, because we are human.

I’ve been increasingly seeing badges of love being worn by parents and partners of disabled people. The badge comes in many forms, it comes in memes, T-shirts, stickers and of course, actual badges to be worn. Commonly it will consist of a picture containing an image, icon or symbol that denotes the particular disability and a tagline which says something along the lines of I love someone with… (insert disability tag here). A common example lately I have seen is I love someone with autism. Perhaps this has been noticed by me, because I am autistic, and because it is May, and it’s just a month after the whole April hell month of awareness campaigns.

There is, I believe an inherent problem with these badges. They have a not-so subtle implication that loving this person is hard, or loving this person is somehow worthy of a badge, or that you love this person even though they are somehow less than you. This is an inherently ableist thing.

The message to those of us who are in fact disabled is quite simply one that says, the wearer, is better than you somehow, and that you the disabled person are in fact less than human. It is very clear that the message of #DifferentNotLess is still a long way from the mainstream. Whether that be in terms of the neurodiversity paradigm or disabilities in general.

I have an online acquaintance who has turned this around and created some images with I love someone with neorotypicality, or I love someone with allism. The outcry about these kind of turn around’s from the non-autistic community is telling. They feel labelled, they feel angered, they feel pain. And there is the crux of it. It is painful.

It is painful to read such a statement as I love someone with autism, because it makes you feel that you are not worthy of love in your own right, you are not worthy of love for just being you. As if you are only loved because of the disability and not for the human person that you are.

I am fairly certain that most parents and friends don’t actually intend to convey this message when they don such badges. I am sure that these people do in fact love their children and friends because of who they are. I am sure they do not intend to act in such an ableist way, and I am sure they do not intend to make these implications to their loved ones. But the reality is that they do.

If you love your child, just declare it, there is no problem with that at all. It is perfectly appropriate and wonderful to declare that love, but it doesn’t need the caveat. How about I love my son, I love my daughter, I love my friend.

I appeal to you, if you wear such badges, please stop.

Please, change the badge you wear, because the badge with caveats, it hurts.

If you love someone, just love them. If they are disabled, just love them. If they are not disabled just love them.