Born-day and #IDPWD

It’s my birthday and it’s also International Day of People with Disabilities.

#IDPWD2019 a day to acknowledge our struggles, be at one in pride & commit further to acting together to remove systemic inequality. Whether you like international days or not – that’s my intention today. Plus it’s my birthday, so for me it’s a celebration of survival.

There’s been a lot of talk about invisible disability and I’ve been recovering lately from some experiences I would rather not repeat, but that sadly have experienced a lot during my lifetime.

Recovery means doing what you have to do.  That might mean talking or not talking, writing, resting, rehab.  It also means dealing with the stigma (your own internalised and other people’s) associated with recovery.

Don’t let the “today tonighter’s” get under your skin.  These are the people who cry “fake” when they don’t understand disability issues like; semi-ambulant use of a wheelchair or that screen readers help low vision people use a mobile phone or people who think disabled people are broken. The people who say “it can’t be that bad” to criticise people taking care of themselves.  This is the ableist shit we cop from people who buy into the burden arguments of the old medical models (whether inadvertently or not) and this blog entry is not for them, it’s for PWD.

So here are my tips for dealing with ableist S.H.I.T.

S – is for Shame.  Shame and stigma are weapons and it’s something we are learning to resist (internal and external shame).  Try to work with kindness to yourself when you feel you are self-shaming.  For example, mental health issues are experienced by 85% of the population and probably everyone at some point in their life, if we are honest.  If you’ve had someone tell you to hide a non-visible disability because you can – gently remind them reasonable adjustment is a right and shaming you is harassment and hurtful.  Remind people (or get an advocate to remind them) that disability is not to be ashamed of and that shame can be a form of abuse.

H – is for Hate.  As an Autistic person I struggle with people’s hatred.  I just don’t get how people can hate with passion.   How it translates into thinking that because a disabled person rights are somehow special treatment – or that we are a burden.  This is hatred and it covers a view that disabled people are less than them.  I call it out and have tried to learn to call it out with compassion, but none the less call it out. Hate is hate – even when sheathed in politico speak like “merit based” arguments used to diminish what a disabled person might need to contribute.  The whole rotting pearl of “we can’t change everything for one person” crapola when people merely ask for a reasonable adjustment.  Same with poor taste jokes and casual use of disability slurs. Call out people who slag off someone else because they are different and if you can’t safely call it out – allow yourself to get space away from them or get an advocate and get to safety.  You do not have to put up with hate.

I – is for I.  Allow yourself to be an I.  Hold space, take up space.  You are enough.

T – is for Time.  Things are getting better over time.  Take employment, for example.  In 3 out of the last 4 jobs I have disclosed disability safely.  Compared to before that when you couldn’t even talk about it.  Things are getting better, it may not be quick enough for many of us sadly, but together we are making change.

Keep on keeping on. We can do it.  #disabilitypride

Tired

I feel like my soul is tired.

I’m tired of this endless roundabout of abuse and discrimination.

Tired to the bone.

This is chronic illness. The co-occurring crap of my life as an autistic person triggered by lack of accessibility.

Needing to shut myself away to survive and hoping I’ll resurface again.

I keep thinking if only I could find the one place my autistic creativity is harnessed so I’m not exhausted. Where I’m not told to be neurotypical in order to exist. Where is that place?

That will be the balancing point and I’ll enter my 50th year feeling….feeling….

How do you know what it is if you’ve never felt it? Is it connection? Is it belonging?

I don’t know how that would feel. Those are things I see the neurotypicals feel.

Knowing they fit. Knowing they belong. Not always on the outside.

That would be nice.

Unlearning with Pepper

So after three years of thinking about this I’ve decided to take advice about a service dog.  This past two years has been an exercise in unlearning.  Unlearning ableism.

I looked at various options and decided to follow the MindDog process; whereby you can select your own dog and work with the trainer to train that dog to be accredited.

I sort out the services of Laura Mundy who is an accredited MindDog trainer and psychologist.  We discussed what personality dog I would need to seek based on what I wanted to get from the relationship with the dog.

During my teen years I had a horse who I credit with saving my life.  Another myth about Autistic people is that we don’t have empathy.  I have trouble reading other people’s hints, sarcasm and passive aggression as I have low cognitive empathy, but I have enormous amounts of effective empathy.  I am affected by high emotion settings but struggle to process why.

My response as a child was to freeze, as an adult it is a meltdown (which was often confused with a panic attack). My horse used to calmly help me get rid of that excess emotion when we went riding alone. I loved just being with her, away from people, sitting in a quiet spot in the bush.

Laura recommended a greyhound because of this history and gave me a list of traits to look for in a rescue greyhound.  An important part of this process is the right bond between dog and human.  The next step is to start the MindDog accreditation process along with training and assessment from Laura.

The idea was to find a dog that will encourage me to find the least crowded ways of walking by pausing and making me slow down, slowing my responses to my anxiety. A chilled out dog, but a dog that can also understand that my anxiety comes from sensory overload and how to help me deal with that. Slow down Jacci, walk another way. When I am anxious generally, the dog will take my focus away from the anxiety inside of me.

img_2880.jpgI was approved at two services and then went to look at Pepper on Sunday the 24th February 2019 (I won’t forget this date) at the Baxter office of Gap Greyhound Adoption Program Victoria.

I was super anxious as she approached me, but was holding back tears and pretending to be okay.  She just knew.

She walked up to me and pushed her head into my legs and leaned against me really affectionately.

I wanted to cry, but the urge to cry fell away and I felt safer.

It was amazing and so reminded me of my horse that used to put her forehead on my chest and gently press.  Note: yes, she is thin.  There are efforts underway to improve her weight, she was a racing breeder and she has gained a bit in the last two weeks already. 

I picked her up and brought her home early Saturday the 2nd of March and in just 24 hours I already feel different and we are getting along amazingly well.  Like I can do this.  Like I am not less for being who I am.

She seems to know when to leave me alone and when to intervene.  I often feel dreadful anxiety in the mornings just getting out of bed.  This morning she refused to budge until I had processed that with doggo cuddles.  Only when I felt better did she go “come on let’s go”. img_2916

With Pepper I am about to shed years of learned shame.  But this shame doesn’t come from nowhere.  It comes from my early life and how the world (and the people around me) spoke of anyone with a disability.

So many times I’ve resisted so many therapies and simple steps I could take to make my life better. I hid and suppressed things that I now know are part of me and not things to be ashamed of. Because deep down, despite my protestations otherwise, I thought I was “broken” and was trying to make myself like everyone else.

I didn’t want to be pitied and cooed over like my Dad was.  I couldn’t imagine anything worse, but that was happened to my father with his chronic illness.

Then there was the martyrdom and burden stories associated with his care and the narratives about how stoic and brave he was.  To me he was just Dad and I knew he felt like a burden enough without these dramatic stories circulating around him.  He would hide symptoms of his illness to prevent the drama it would create around him, something that didn’t help with the chronic heart condition he had.

To other members of the family telling these stories appeared to give them hero status in a 1970’s and 80’s world were carers “had to put up with a lot”.  The culture of ableism was high during this period, without any real discussion about what the person on the other end of that caring felt or thought or needed.

I know I did not want to be the centre of attention for being broken.  That was the family story.  So I pushed on through and at times, and sometimes did break myself.

I am no longer ashamed of my synaesthesia and the anxiety it can cause me.  I have a clearer picture of how I internalised that ableism in the past and how I can change it now.

Conversations with optometrists are coming back to me with new relevance.  They would do extra periphery vision testing because I would describe what I experience.  How artificial lights exhaust me, or how I experience the world like I am under a spotlight. How nighttime street lighting makes me feel as though I am in a tunnel.

Early on in my life wearing glasses I stopped telling the truth about the swirling but almost translucent colours (it varies in intensity) that permeate my vision moving in time to the sounds around me.

When a psychologist suggested wearing sunglasses to me and that I wear them anytime I am not at a computer, I balked.  Now I do, and the improvement in my quality of life is rapidly improving, because I am not so exhausted mentally.

I now know that when I talk about the tastes in my mouth when I touch things, I don’t need another test for diabetes.  I know understand how I stim (see this great video on this) and what it means for me, but that’s another whole blog entry.  Check out Agony Auties great video on stimming and quiet hands and shutdown.  My experience is very similar to hers.

Must be time for a walk to the beach with Pepper.  Yeah, that sounds like a plan.

Being okay with not being okay

People who know me really well are fully aware I struggle with feelings of social isolation, even when surrounded by people who care. I’m currently trying really hard not to give into feelings I don’t belong anywhere and each day is a monumental exercise of survival. I’m trying not to give up because I still believe I have something to offer, now matter how minuscule.

With a Royal Commission into abuse and violence of disabled people (I’m exercising my right to use identity first language here) coming up – I have lots of stories to share. Mainly about trying to get help in the so-called health system and being told similar to the 17 year old in this story.

https://www.smh.com.au/healthcare/autistic-people-dying-at-twice-rate-of-general-population-new-study-20190225-p5105t.html

Some of the stories from my 20’s include violence, restraint and abuse from healthcare professionals and family members. All as I grappled to come to terms with what I now know to be AS meltdowns and an escalation of issues after a significant and life threatening injury.

Because of regular experiences like that I’ve got to the point where I don’t believe that I deserve a family or partner and for the last 7 years I’ve avoided new close relationships – because I can’t handle anymore violence. When it comes to close personal relationships I can’t tell when someone is trying to take advantage of me and people have done exactly that.

I’m also going to talk publicly about what happens to us when we go to emergency rooms, when we are told that we need to be sedated and go home and sleep (as a GP recently told me) because of other people’s violence against us. How we are dismissed and abused further when we start to crack because we’ve been trying to express things in our own way after months or years of trying to get help. When we are told we are mental or crazy for not wanting to be assaulted or verbally abused.

Fuck “Are you okay?” campaigns. Cause when we are okay with not being okay we are dismissed, ignored or told we are burdens.

Not sure why we need to spend millions on campaigns to justify asking for help when you ask for help to be told to suck it and see. Makes not much sense.

Most of my wage is now spent on just trying to keep well in the hope things will get better. I’m resigned to the fact I have a short shelf life and I’m determined to do what I can so that others don’t go through what I have. It’s not about me. I don’t care enough about myself for it to be about me.

In the 80’s and 90’s I could access services without it costing $180+ an hour (yes, after the Medicare rebate and no, private insurance is not helpful), now I’m pushed from pillar to post trying to get a therapy that has worked for over the last 25 years.

I can’t turn off what I experience. I can manage it, but there are times when I need more help and I’m asking for help only to not be able to get the right help because it’s $250 an hour. I get 10 visits a year at $180 and I need 30. Plus I need OT I can’t afford.

Then people try and offer essential fucking oils like people say “the only disability is a bad attitude”. To cite Stella Young no amount of smiling at the system is going to change it.

I want to work. I don’t want months off and homelessness and long periods of financial difficulty. I’ve done that three times now. Next time I won’t come back from it, I know this.

I get that for some, I fit a “burden of disease argument” and for many “tax payers” I don’t deserve help, that’s the message loud and clear. But for the moment, I’m still here and still trying.

Recipe for A Romantic Gaslight

A poem about gaslighting.

Whilst it’s not currently present in my life it sure has been in the past. Something I don’t wish to repeat. Aspie women are especially susceptible to “gaslighting” as I’m sure some men also are.

Gaslighting is a common form of manipulation (that anyone can experience), particularly when someone wants sexual access to someone but has no intention of that being respectful.

I hope it also highlights that gaslighting is sometimes seen as socially acceptable as part of “courtship” or flirtation (“treat em mean to keep em keen” rubbish) and thus harder to identify/deal with. However it is also a well recognised form of psychological abuse. I hope this poem helps describe that experience:

Start with a Queen of hearts and dry ingredients of care,

Make sure you prepare her when her emotion is laid bare,

Add compliments which she might be in of thorough need,

Combine her insecurities with sentiments, she’ll heed.

 

Then slowly tip her back into the objectification pot,

Gradually turn up the sexual commentary to “hot”,

Flip over her hesitations, say “But I like you for your brain”,

Withholding your feelings until she simmers in confused pain.

 

When you’ve tasted her sweetness but turned her bitter,

Turn up the gaslight again, pretend you’re not hitting on her,

If to expectation she does not quite seem to want to rise,

Add a good splash of ghosting and well picked lies.

 

Add salt to wounds and slowly reduce her down,

Slowly separate her from her previously held crown,

Pretend to listen and give her an occasional gentle stir,

Recite over the pot “But I’m not really sexualizing her”.

 

You’ve got her to boiling emotion but you’ve not listened,

Now her anger, like shining glaze, is starting to glisten,

Now you can say her crazy recipe is starting to go off,

Add a pinch of blame to her feelings, use lies to top.

 

Serve her broken heart up as proof of your skill,

Move to the next vulnerable woman at your will,

Season her with tales of how her before was madness complete,

Butter her wisely, the recipe takes best if you keep it to reheat.

I hear you and I love you

I hear you. I love you.

There have been a lot of you lately. In the press. On social media.

I hear how you demean other women for speaking up about harassment and abuse. I hear your internalised misogyny.

Here is what I hear you say:

“Don’t waste police resources for a small thing like harassment”.

“Get over it”.

“You need to deal with your past”.

I hear you. I love you.

If you are ever harassed, abused or assaulted I hope you report it. But I know it’s not easy.

But I will gladly stand beside you.

Believe you. Hear you. Love you.

I’ll hear you and believe you if you are harassed and need support. I’ll choose to love you.

I reported violence to the police and they told me he loved me. For a headlock.

No one heard me. Not even the police.

Since then I’ve seen huge changes with police culture and I’m happy to report now – but many voices once told me not to. I nearly died. But I’m here and I’m not letting fear get the better of me.

I hear you. I love you.

That’s just one example of horrors I have recovered from. Talking about them doesn’t mean I haven’t healed. It means I can hold peace with my past and be strong enough to carve a better way forward – with honesty.

I love me now. So I won’t hesitate to stand up to harassment and abuse – even when it’s you, another woman, trying to strip me of my right to be heard. I hear you extending the reach of the patriarchy with your compliance, your collusion. I love you.

I feel fear too – but I face it. I’m hopeful that you can one day too.

But I’ll love you too. I’ll call you out on your hatred and condoning of harassment when you diminish its impact. That’s how I’ll love you.

I’ll process the hurt you inflict on me and I’ll choose to love you after you’ve shown how much you hate your own sex. But I won’t buy into the narratives that say women like me are man haters for speaking up.

I hear you. I hear how when you minimise other women’s experience of harassment and abuse, how much you dislike your own sex. I love you.

I love you. I hope you can learn to love your own sex and face that internalised misogyny head on.

I hear you. I love you.

A Story of People and Dogs

A story of people and dogs.

Dogs. Some are dangerous. Some are not. But you don’t go up and attempt to cuddle them all without making a thorough assessment, do you? Do they look like they might bite? Showing whites of eyes? Ears back? Growling? Please note they may still wag their tail when feeling aggressive and can still be dangerous – so stay away when they exhibit all or many of these behaviours.

People. Some are dangerous. Some are not. But you don’t go up and attempt to cuddle them all without making a thorough assessment, do you? Do they persistently breach your boundaries even when you make them clear? Do they insist on behaviours you have asked them to stop? Do they get angry with you for asserting your personal right to feel comfortable and safe? Please note people can smile and look presentable and still be assholes I want nothing to fucking do with and I will exercise that right…and I’ll be happier for it (true story – you don’t end up lonely – you end up loved!).

End. Of. Fucking. Story.