If I let them hear what I have to say…

“But no one knows me no one ever will
if I don’t say something, if I just lie still
Would I be that monster, scare them all away
If I let them hear what I have to say
I can’t keep quiet…”

My choir sang this song by MILCK and AG, and I love it. The website about the song says it has been adopted by choirs of “Gentle Rebels who bravely express themselves on behalf of the Misfits, the Survivors, and the Dreamers. Towards the end, it goes “Let it out now… There’ll be someone who understands.”

I’m not good at keeping quiet, and that’s why. I want the other misfits, survivors and dreamers to hear me and understand, they are not alone.

So I’m constantly coming out about being bi (and yes, it is a constant journey, the heteronormative closet is a maze). I’m also out about other parts of my identity that are sometimes hard to talk about. Like being mad.

Well, I was, until I started working in mental health, and it got unexpectedly complicated.

I used to be completely out. Well, just as most people seeing me out with my kids assume I’m straight, people also see me functioning reasonably well and assume a clean bill of sanity. But from when I started using mental health services in my late teens, I started talking openly about my experiences. As an 18-year-old I had some involvement in the Like Minds, Like Mine campaign, and I have seen the change since then as people have spoken more publicly about their experiences, and the burden of stigma has worn away a bit. However, it hasn’t worn away evenly. Some diagnoses attract much more of it. It’s also a different view across diverse cultures.

So, I was open about my struggles, and then when I was in a period of several years of wellness I continued to talk about my journey and the diagnoses I was given along the way. Then after a lot of soul searching, I decided I wanted to work in mental health. I thought I had strengths I would bring, and my past personal experience of mental distress would give me insight and empathy. My first job was as a support worker in an NGO, and the job ad framed having lived experience as a strength, and I referred to my experience in my cover letter.

I was a bit surprised once I took my first steps into a new career to realise that I had accumulated quite a bit of self-stigma, and I just hadn’t been in a situation that brought it to the surface. For my next job applications, there certainly wasn’t any indication that my experience would be seen as a strength, and in facts some of the HR/Occupational health processes seemed to imply it was a liability. Then layers began to be added. The supervisor who believed that it would be dangerous to let clients see my arms bare (with the crisscross of faint, years old scars). The person in a senior leadership position who cautioned me against talking openly about myself because of the potential negative impact on my career. I spent nearly a year in a workplace where it was very clear that it was not safe for my past to found out. I kept quiet, and I wore long sleeves even on the days when the heating was in overdrive.

But I can’t keep quiet.

I don’t want to be part of the system of stigma and silence. I was lucky enough to get a new job in a workplace that is a lot more supportive. Even then I wasn’t open from the beginning. I’d started to experience anxiety. I didn’t have role models to turn to. Everyone seemed nice, but would they really think I was OK if they knew? Slowly I took tentative steps. And as I opened up, other people shared more of themselves with me. I wasn’t alone! Having experienced my own mental health struggles didn’t mean I was too messed up to cross the threshold to the staff area. It was a huge relief. And then I had a few conversations where people shared things that they had not felt able to talk to anyone at work about, and they felt safe and supported sharing with me. That made all the anxiety about speaking out worth it.

But still, something has held me back from some specific parts of my story: Stigma. It’s still hanging around. It has become a lot easier to talk about depression, and anxiety, and lots of people can relate to those experiences to some degree. But bipolar? Borderline Personality Disorder? Psychosis? Eating disorders? Suddenly people get uncomfortable. Those conversations are hard enough to have in society generally (and I know, because I have had some of them) but my feeling is that it would be even harder in the work lunch room.

This week I had an experience that made me feel glad that I had only shared a small part of my story. I briefly felt angry about the comments that made me feel like that. Then the “I’m not good enough” well worn tracks in my brain played out again, along with the waves of shame. Then I just felt weary, and hurt, and sad, and I cried.

It should not be like this. We know that there is good evidence for peer support being helpful, but there is no framework for people who are not in peer roles/organisations. To me it’s a no brainer that one of the ways you make a service more responsive to a population (e.g. Maori, LGBTIQ people) is increasing accessibility and safety for people in that group to work in the service. Why would it be any different for people who have used mental health services?

The moments when the shame and stigma and anxiety get triggered are hard, and sometimes it feels too much. At those times, my brain starts to convince me that I really am too messed up. Every moment as a therapist that doesn’t run smoothly becomes evidence that I am fundamentally flawed. And then the moments when I get tearful around others, part of me starts to worry that other people will see right through me. They will see how messed up I am, and they will think that I shouldn’t be in their workplace.

When I hear attitudes that perpetuate stigma, it gives those negative thoughts more power.

It won’t always be like this. I’m hopeful that we will continue to wear away at the stigma. I got to go to a service users in academia symposium, and I felt so free there. I thought to myself, “this is what it would be like if I went to a queer event for the first time in my 30s!” My community of misfits and people I can be open with is slowly growing, even if we’re not ready to march under our own banner. One day I might feel that freedom in other places. But I’m impatient.

“they may see that monster, they may run away
But I have to do this, do it anyway…

Must be someone who’ll understand…

I can’t keep quiet.”

 

Photo credit MutantSpace

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Despair, fear, and the decision to hope.

I used to see myself as a hopeful person. I was always seeing opportunities to plant seeds of change. I had a dream for a future where we cared for and restored the vitality of our planet. I truly believed the arc of the universe bent towards justice. I thought this way of seeing the world was intrinsically part of me. I also had faith, not in an interventionalist God, but in a greater power oriented towards justice and renewal.

Two years ago, all that disappeared in a moment.

We had just found out that Miromiro was on the way, I read an article about climate change, which predicted catastrophic, near-term outcomes. As I read, a chill passed through my whole being, closely followed by panic. I was shaking all over, my head spun, I couldn’t breathe. Over the next week the panic continued to come in waves, and in the moments in between I was close to tears. My mind completely bought into the worst case scenario, and with that came the fear that our children would suffer.

Since then, obsessional worries and an accompanying sense of dread have been a nearly constant feature of my life. There are times when I am really busy and engrossed in things at work, and I don’t notice. There are brief moments when I am captivated by the children’s laughter and forget my worries. When I sing with my choir I have an hour or two of peace. Once these moments pass, it is back again. Fear, tinged with grief. It encroaches on activities that I used to find grounding and enjoyable. Gardening now brings anxiety about whether we will be able to feed our children in a changing climate. With droughts, massive hailstorms, plagues of cicadas, and now weeks and weeks of rain drowning our spring seedlings, growing food has not been easy in the past few years! Time with my children almost always involves sadness tugging at my sleeve and trying to get my attention. Church used to nourish my sense of hope and purpose, but these days I sit there feeling disconnected and numb. I’ve become depressed, and at times overwhelmed by despair and hopelessness. Some of it is secondary sadness – I feel grief that I am missing out on enjoying my children’s first years, which then makes me more depressed, which means I miss out more, in a vicious cycle. I can’t see the world getting better, and I also can’t see myself recovering from this state.

Some weeks are a lot worse. The US election brought one of those weeks. Anxiety took the opportunity to grip me and shout in my face about how if the US pulls out of the Paris agreement, we’re going to cross that line and climate change will spiral out of control… but we might not get that far, because Trump might blunder into a nuclear war first. These thoughts left me literally shaking with terror. I cried on and off for most of the next day. There were plenty of articles on the web to further fuel my fear.

I was just starting to breathe normally again, when we were woken at midnight by a massive earthquake, bringing more immediate worries to the fore. Then there were floods.

I am grateful that just before these recent stressful events, I went to a talk by Rev Dr Rebecca Dudley, on Activism, Despair, and the Practice of Hope. I saw a billboard advertising the event, and it seemed to speak to where I was at.

Rebecca talked about hope as an intentional practice. Not something that just happens, but something we can work at. One of the things I liked most was that she spoke of hope as an act of defiance. Hope is a decision we can make. It is about courage and defiance, not necessarily optimism. She talked about various elements of her own practice of hope. These included needing to draw from a deep well – those things that give you strength and meaning, be it music, prayer, nature, community…what nurtures your soul. Prayer, confession, taking small steps to bridge gaps, and finding the job that is yours to do were also part of her practice.

“If you find hope easy, you have not been paying attention. You have not sat with someone long enough. You haven’t listened closely enough. You have not cried hard enough. You have not been angry enough at injustice. If you start with the right question and you face it squarely, you will hear and see some unbearable things. Here what I know for sure: Hope starts by looking steadily at reality. It goes straight through the middle of despair. Then it is pulled into God’s will for the world God loves so much. Hope is freely available. But it does not come cheap.” – Rev Dr Rebecca Dudley

It is a stance that fits well with the approach I use at work, and try to practise in my own life – Acceptance and Commitment Therapy (ACT). Trying to use ACT in my current struggle, I try to notice the thoughts and feelings of despair, and make space for them, but not get completely caught up with them.  I try to be present in my life, in the present moment. And I try to act in line with my values. Whatever is going on in the world around me, and in my own mind, I can always choose to act in connection with my values. Among these are social justice and care for the earth. Despair tells me there is no point trying anymore. To defy despair,  I can keep on taking actions, however small, to bring the world I long for a tiny bit closer to realisation. I can speak out against injustice. Act with compassion. Plant trees.

This is part of a mural created by our church – it captures our community’s values and vision for the world.

The other thing which has made a difference in the past week was my last session with my therapist. I was talking about how despairing I felt about the world and imminent disaster. She said to me, “OK, so what if you’re right. Just say your worries do become reality. What would your children need? What would you want for them?”

Love. A sense of purpose. Connection with community. Kindness and compassion. Resilience. Curiosity and open-mindedness. Creativity. Belief in justice. Hope.

No matter how much I am struggling inside, how can I act as a parent to nurture these things in my children?

I can’t convince my mind that the future is not dark… but I can act as though there might be a miracle. Even if the miracle never comes, striving for justice and acting with love is never going to be the wrong thing to do. It might make a difference in the here and now.

And even if my brain is geared towards the worst case scenario, perhaps I can bring up my children to practise hope – defiantly.

Why therapists should know about aphantasia

Aphantasia is a newly coined term for the inability to visualise, or to see things with your mind’s eye. You can read about it in my previous post here, or follow the links at the bottom of this page.

Since aphantasia has been gaining some media attention, I have been pondering the implications for psychological therapies. I have recently started working in mental health, and have previous experience as a service user. An understanding of aphantasia is definitely important if you are working with people who experience this.

Why should therapists/counsellors know about aphantasia? I have a memory of sitting in a counselling room, my frustration increasing as my therapist insisted that I try to visualise a calm lake. As in previous sessions, I had said I didn’t want to do this as I knew it wasn’t helpful. He thought I should keep trying. I didn’t know at that time that some people could actually visualise, but I knew that thinking about a lake seemed a stupid way to try to relax. Relaxation visualisation is a technique which is quite often used by therapists, for example a “safe space” visualisation. This is going to be confusing, frustrating, and ultimately a waste of time if the client has aphantasia.

Visualisation techniques are used in a range of therapies. I have recently done several workshops in Acceptance and Commitment Therapy. Most of the presenters used visualisation exercises in their teaching, and to demonstrate exercises they did with clients. Examples include:

• One “defusion” exercise in ACT involves visualising leaves on a stream. “Visualise yourself sitting beside a gently flowing stream with leaves floating along the surface of the water. Take each thought that enters your mind and place it on a leaf… let it float by.  If your thoughts momentarily stop, continue to watch the stream.  Sooner or later, your thoughts will start up again. Allow the stream to flow at its own pace…”
• One presenter got us to visualise someone who had made us feel supported and uplifted. We were to imagine them looking at us, looking into their eyes and seeing them seeing us. Then we were meant to bring their face closer and turn it around and put it behind our own face, so we were seeing with their eyes.
• Another presented demonstrated what it is like when our anxiety is taking too much of our attention. He held up a sheet of paper, and asked a volunteer to picture all of their worries on the piece of paper. He then held it right in front of their face.
• One presenter talked about working with a veteran who was experiencing intense shame about not intervening when his co-soldiers desecrated dead bodies. The therapist had supported him to visualise himself in that scene, and looking at his own face he realised how young and scared he had been at the time.

Obviously, none of these techniques would be very effective working with a client with aphantasia.

As we did the exercises, I found myself getting distracted by trying to figure out what I was meant to do. What on earth does a thought look like? What are people placing on the leaves when they do the leaves on a stream exercise?

Recently I have also been looking into EMDR (Eye Movement Desensitization and Reprocessing). A lot of the clients I work with have PTSD, and EMDR is proven to be an effective treatment for helping people process trauma. I don’t know much about EMDR, but some of the descriptions I have read involve clients identifying “a vivid visual image related to the memory” and focusing on this image (and related emotions and sensations) while engaging in EMDR processing. To work with someone with aphantasia, a therapist would need to be able to adapt their approach so that they weren’t using visualisation. I have spoken to a psychologist who uses EMDR, and she thought it would be possible to adapt the protocols in this way. On the internet I came across an account of someone who had been a client with a therapist trying to use a visualisation based EMDR procedure. The client didn’t have knowledge about aphantasia so could not explain their experience, and the therapist became very frustrated that it wasn’t working.

Obviously there are implications for a number of therapeutic approaches, and it would be good if more counsellors and therapists had an awareness that this is part of some people’s experience. If client hasn’t heard about aphantasia, it might be difficult for them to explain why something is not working for them. Knowing about aphantasia will help therapists check whether visual techniques are helpful. I think the worst thing a therapist can do is deny that a client’s experience is “real” – which is what one therapist at the conference basically said to me. “You could learn to visualise if you tried hard enough.” If she’d been my therapist, I don’t think I’d come back!

Although Adam Zeman is keen for aphantasia to be understood in terms of a variation of human experience, rather than a disorder, it can cause some people distress. This is another reason it is useful for therapists to know about aphantasia:

One of the responders to Zeman, Tom Obeyer from Ontario, Canada, said, “It had a serious emotional impact. I began to feel isolated — unable to do something so central to the average human experience. The ability to recall memories and experiences, the smell of flowers or the sound of a loved one’s voice; before I discovered that recalling these things was humanly possible, I wasn’t even aware of what I was missing out on.”

Obeyer said that the condition has severely affected his relationships since he can’t visualize his partner unless they’re physically with each other. He also struggles with the inaccessible memories of his mother who passed away. “After the passing of my mother, I was extremely distraught in that I could not reminisce on the memories we had together. I can remember factually the things we did together, but never an image. After seven years, I hardly remember her,” he said.

(from Science Explorer)

I have been reflecting on my experiences as a young person. I was diagnosed with Borderline Personality Disorder. Some of the experiences associated with this include:

• Frantic efforts to avoid real or imagined abandonment
• Identity disturbance, such as a significant and persistent unstable self-image or sense of self
• Chronic feelings of emptiness

I wonder now whether having aphantasia contributed to some of these experiences being painful. If someone abandoned me, I wouldn’t be able to conjure up a picture of them – they would be gone from my head! Likewise, when alone and experiencing emotional distress, I couldn’t conjure up the faces of loved ones as a source of comfort. I was alone with my feelings, and mental darkness.

I wonder if the fact I couldn’t visualise myself as a child, or visualise myself during past experiences, could have contributed to the sense that I didn’t have a stable sense of self.

I’m sure that it is possible to have these feelings and experiences without having aphantasia, but I wonder whether, for those of us who do, it adds another layer.

You can find out more about aphantasia here:

http://blogs.exeter.ac.uk/exeterblog/blog/2015/08/26/aphantasia/

http://www.sciencedirect.com/science/article/pii/S0010945215001781

http://www.bbc.com/news/health-34039054

http://www.nytimes.com/2015/06/23/science/aphantasia-minds-eye-blind.html

http://vanwinkles.com/what-it-s-like-to-realize-you-have-aphantasia

http://discovermagazine.com/2010/mar/23-the-brain-look-deep-into-minds-eye

Can I picture this? Do I see what you’re talking about? No! An aphantasia Q&A

Scientists have come up with a word for the inability to mentally picture things. Aphantasia is the new term for having a blind mind’s eye. I’m very excited that I have a word to describe my experience, because it now means I can look up information about it, connect with others who have similar experiences, and point people to articles and interviews to help them understand what it is like for me to not be able to visualise. Kim Hill recently interviewed Adam Zeman, one of those who coined the term and has begun researching aphantasia. I wasn’t quite satisfied by some of his responses, so here are some of my answers to questions from that interview, as well as some questions that friends have asked me.

1. When did you realise you couldn’t visualise?

I was sitting in a friends living room, with a few people who were talking about what came up in their minds when someone said the word “lake.” I started to think about lakes, the way I always think, in a soundless inner monologue. “Lake. Hmm. Which lake? I suppose the lake I have spent the most time around is Rotorua, but my favourite lake might be Waikareiti, I really enjoyed walking around it.” I wasn’t analysing my thought process, because I didn’t realise it was unusual. My description of thinking would be “it’s like you’re talking to yourself, but you don’t actually hear your voice with any quality of sound, it’s just, well, thoughts.”

Then someone said “I can see the word, and it’s blue.”

What? Huh? Wait, what… you actually see?!

Other people there said they could see a picture of a lake, rather than seeing the letters. Some had other sensory experiences, such as a sense of wetness. I was amazed! Until then, when people talked about picturing things, I thought they were just using an abstract metaphor. I think it was only hearing my friends compare their experiences of text versus pictorial images that I finally clicked that they were literally seeing something. In their minds.

After that conversation, I tried searching the internet to find out more about different mental experiences, but it is very hard to find answers on the internet when you don’t know what words to search for. I’m very grateful to those who came up with a term for my way of thinking.

2. Can you picture your loved ones?

No, not at all. Now that I know that other people can do this, it makes me feel a slight sense of loss. Photographs of loved ones are very important to me, because without them I cannot see my grandparents or friends who have died. I know things about how they looked, but I couldn’t draw a realistic portrait of them – partly because I have not studied how to draw portraits, but also because the details are too complicated to describe and memorise. A face is more complicated and unique than a novel, and I couldn’t recite a whole novel accurately even if I had read it many times.

Please don’t be offended if I don’t notice you have had your hair trimmed – I have nothing to mentally compare it to.

3. How do you recognise people or places?

Because they look familiar! It is hard to describe, but I know when I have seen someone or something before. Details of their appearance must be stored away as knowledge rather than as pictures in my mind. However I do struggle to recognise people I have only met briefly, or to recognise people if I see them in a different context. My partner has often teased me about how unobservant I am. I think it is hard for me to store visual information. If we go for a walk and talk to each other, I will struggle to remember what we passed by on the walk, unless I actively thought something about it at the time, but I will be able to remember a lot more about what was said.

I would be a hopeless police witness, as I could only recall details I had mentally noted, for example if I had thought that someone had funky hair, or noticed that their nose was unusually large. It would be hard to describe the exact shape of their nose. However, because I do recognise people and things when I see them again, so I would probably recognise them from a photo – although maybe not as easily as someone who had also formed a mental image.

4. Could you tell me whether the green of pine tree is darker than the green of grass?

When I look at the world I can see differences in colour and lightness. I have noticed how bright the green of grass is, and how pine trees appear dark and gloomy even on a sunny day, so I know that the green of pine trees is darker. If you gave me 50 shades of green paint, I could look at them and recognise which colours were closest to the green of pine and the green of grass.

5. Could you paint a picture of something if it wasn’t in front of you?

When I see things in the world, I notice details, and have thoughts and emotional responses to what I am seeing, which I can later recall. I can draw something well if I have noted enough details about it. For example, I could draw a fuchsia flower, because they are one of my favourite flowers (hence my blog name) and I have paid them a lot of attention. Since childhood I have thought they look like flower fairies, and I have noticed the way the outer petals curl up like a skirt and the stamens dangle like slender legs. I have not taken in as many details about the leaves, so I would probably need to erase and redraw them until they looked “right” or recognisable to me. I have not noted anything about the pattern in which the leaves grow on the branches, so I could take a guess or look at a tree or a picture of one before I could draw that accurately. Here, I’ll have a go:

(I drew the first picture on the train, after hearing the interview on the radio and trying to figure out how to explain my artistic process. I hadn’t logged in to my blog and seen my cover image for a while!)

I quite like creating artworks which are imaginary scenes, or symbolic representations, rather than realistic images. I often include words in my paintings.

6. How did you answer exam questions when you studied art history?

I recalled facts I had memorised about paintings. My inner monologue would recite facts I had read in books or written in my notes. It wasn’t my best subject in school, but I passed!

7. Could you tell me how many letters of the alphabet have low-hanging tails?

Within my head I mentally sense the movement of holding a pen and writing the letters, going through the alphabet.

8. Could you tell me how many windows are in your house?

Yes. In my head I mentally move through our house, and I mentally stop in each room and think about how many windows there are. I know where they are because I remember standing at the window or pulling the blinds.

9. Could you decide what to wear if you weren’t standing in front of your wardrobe?

Yes, because I know what clothes I have. For example, I know that I recently bought some pants because I liked the mossy shade of green. I was a bit less certain about the pantaloon style, but the fabric felt nice and light for summer. When I bought them, it was hard to know whether they would go with the clothes I already owned. When I got home I held them up against my shirts, so that I could see how they looked together. Now I have retained the knowledge of which shirts looked good with the pants.

10. Could you be an architect/designer/illustrator…

I studied at architecture school for two years. When I was designing something, I would have ideas about what I wanted, e.g. that I wanted it to be curvy, or to have grass on the roof. I could be inspired by other designers and architects and want to do something which resonated with their work. When I actually started on a project, I wouldn’t be able to visualise the final work. I would start by doing a sketch, which I would then erase and redraw until it looked good, or sometimes I would cut out pictures and arrange them into a collage and then draw something based on that. Aphantasia may caused me some disadvantage, but I managed to pass my papers. I got higher marks in physics, English literature and politics, which is one of a number of reasons I left architecture school.

11. Do you enjoy reading books?

Yes! I love reading, and I enjoy writing poetry. The way I think about the world is in words – I guess the word pictures in books invoke emotions and memories, and sometimes I think “yes, that sounds exactly right… that resonates with my experience… that’s an interesting way of describing it.” Just as I can describe a scene using language, I can enjoy someone’s artful description of a scene.

12. So, you wouldn’t ever get annoyed when the movie based on a book didn’t match up with what you had imagined when you read it?

No. I would only be annoyed if things in the movie actually contradicted what was written in the book.

13. So you can’t fantasise about someone else when you’re (having sex/masturbating)…

No! OMG, do people do that? That’s seriously disturbing!

14. Do you ever have any mental pictures?

Many people with aphantasia have involuntary mental imagery as they fall asleep, in dreams, when using drugs, or even just random flashes of images during the day. I think I am at the extreme end of the visualisation spectrum. Occasionally (maybe once a month?) an image involuntarily flashes in front of me as I fall asleep, but it is only ever very dim and impossible to focus on. Sometimes this is of something I have been looking at something for a long time, e.g. weeding a particular plant for an afternoon. Sometimes it is something random and slightly frightening, like a goulish face which wouldn’t look out of place in a Buffy scene… but weirdly not actually something I remember from Buffy (or anywhere else). My brain just seems to have invented it. Anyway, this gives me a vague sense of what visualising is like. Since finding out more about aphantasia I have been trying to catch myself in those moments and hold onto the image, but I haven’t succeeded yet.

I don’t think that I have visual dreams; I wake up with knowledge about what has happened in my dreams, very strong emotions, and sometimes a sense of movements. I don’t usually remember visual details.

So, that’s a little bit about my experience – others with aphantasia may answer the questions differently, so feel free to contribute in the comments. For those of you who don’t have aphantasia, it is as hard for me to get my head around your experience as it is for you to imagine what it is like for me. So I have some questions for you. I would love to know how you think! Leave your responses in the comments.

What is it like to not have aphantasia?

A. If you are reading a novel set in a country you have never been to, how do you visualise a landscape you have never seen? Or if a person is described in a book, how do you fill in the details which have not been described?

B. How can you keep reading the words if you keep having pictures appear in your head?

C. Do you have times when you are not mentally picturing anything?

D. If you are visualising something while your eyes are open (as I am told some people do), what happens to the things which are actually in front of you? Do they disappear behind your visualisation, or is the mental image transparent?

E. If you are visualising something you don’t remember well, is the image blurry or dim, or are there bits missing from the picture, or do you just make a picture up and later realise it was inaccurate?

F. If you played imaginary games as a child, could you see the things you were pretending to play with? E.g. if you were pretending to have a tea party, could you see the food? Could you actually see imaginary friends?

G. How is visualising different from hallucinating

H. When did you first become aware you were mentally picturing things?

You can listen to Kim Hill’s interview of Adam Zeman here: http://www.radionz.co.nz/national/programmes/saturday/audio/201778750/adam-zeman-aphantasia-and-consciousness

You can find out more about aphantasia here:

http://blogs.exeter.ac.uk/exeterblog/blog/2015/08/26/aphantasia/

http://www.sciencedirect.com/science/article/pii/S0010945215001781

http://www.bbc.com/news/health-34039054

http://www.nytimes.com/2015/06/23/science/aphantasia-minds-eye-blind.html

http://vanwinkles.com/what-it-s-like-to-realize-you-have-aphantasia

http://discovermagazine.com/2010/mar/23-the-brain-look-deep-into-minds-eye

In and out of closets (Part 1)

For me, coming out makes me feel more honest, relaxed, and free to express myself, but it is also a political choice. I believe that it is harder to hold homophobic views if you know someone who is queer and realise they are pretty ordinary and likable. By being visible I can draw attention to issues which affect us. It also helps me connect with others so we don’t feel isolated. I started coming out to people when I was 13, and from then until the past year I have attempted to be out in all contexts of my life. Friends, workmates from previous roles, people at church know that I am queer, and anyone who has seen me carrying a banner in rallies and parades!

Then I got pregnant, and suddenly I became aware of how much we are in the closet unless we are explicitly out. I was doing my fieldwork placement, and so meeting lots of new people, and it felt like I was constantly being asked questions like “What does your husband do?” or “Is the dad going to have some time off?” Then I realised that it wasn’t just the people I was working with making those assumptions. I suddenly became aware of all the people I could pass by in a day who would be seeing my big belly and thinking there was a dad in the picture.

Now that we are mums the questions about husband/dad continue, and I am also aware of all the subtle messages that we don’t quite fit: little things like filling out a form for a healthcare provider and it only has space for “mother___” and “father ___.” There has been a lot of coming out to people I am meeting when I am out with children and without L… and even some coming out together, e.g. turning up to a childcare centre or a doctor’s office as a family and the one not carrying the child being asked “and who are you?” Even once we have come out to people they forget, which bugs me now that Windhorse is old enough to comprehend what people are saying. We saw one nurse together as a family, and then I went back with Windhorse and as we left the nurse said to her “are you going to pick up daddy now?”

Being the non-gestational parent this time was very weird, especially once we were close to the due date. Sometimes I told people, like my new workmates, “we’re having a baby soon” and was met with confusion. On the other hand some people understood immediately and were excited. Miromiro has had a few health problems, and doctors and nurses have often spoken only to whichever of us is holding him, and sometimes say “mum” when they are talking about something which is relevant to both of us. We have generally been very supported. The midwives in hospital were fantastic. Once people know I am the other mum, most of them treat me no differently.

On my placement last year, the subject of self-disclosure came up in supervision, and specifically whether disclosing my queer identity to clients was ever OK. While my supervisor didn’t say outright that it was not OK, in our discussions she presented a number of reasons it could be “harmful.” For example, various hypothetical situations such as a client not feeling ready to come out and feeling uncomfortable. Changing the therapeutic relationship in a negative way, revealing too much, making someone feel I wouldn’t understand their situation? I don’t remember all the “problem” scenarios.

It didn’t sit well with me – particularly as a number of the people I worked with mentioned having an opposite sex husband/wife, in their introductions, as a way of building rapport and partial reciprocity, and this wasn’t seen as problematic. There were other forms of self-disclosure that could, in my view, potentially make people feel uncomfortable, such as wearing a cross on a necklace. For me, as a queer person, seeing a sign that someone was Christian would make me feel cautious about mentioning being queer to a therapist.

In my new workplace I wondered if people would have the same kind of concerns as my previous supervisor. I was considering talking to my manger or my supervisor about it. Then, before the boy arrived, my workmates put together a basket of baby things for us. Some of the young people we work with saw it and started asking questions, and my colleagues gave some matter of fact responses. Well, that solved the dilemma for me… it was out in the open, and nobody made a big deal of it. As new people come to the service, most will probably assume I’m straight because of the hetero -normative culture we live in. But if it does come up, or if they hear me mention my partner to a colleague, I’m not going to stress about it. In our work context, there is a lot of self-disclosure about partners, kids, and small details of our lives. By hiding that part of myself I would be contributing to queer invisibility. In my view, for a young queer person coming through our service, knowing someone who was queer, and open and happy about it, could be really positive.

 

Where I have I been?

Adjusting to a full-on new job… followed by the business of family life with a new little one (and still the full time job).

Our baby boy arrived in June. L carried him, and it was amazing for me to experience it all as the non-gestational parent. The birth was incredible. Miromiro is a sweet, gentle wee thing, smiling and chatting to us lots at the moment. He had some health issues which involved two brief stays in hospital and then minor surgery, which was all very stressful but hopefully everything is resolved now. Breastfeeding was not easy for the first couple of months; he had not read the textbook and also has a tongue tie. It has been very weird for me trying to help from the other side; things like knowing techniques for getting a decent latch but not being able to communicate these or demonstrate them from opposite L. Feeding has become much easier over time for them both though. This boy adores his big sister. He thinks she is the cleverest, funniest, most exciting person in the world. She adores him too, and sometimes we have to remind her not to squeeze him too tight or get too in his face.

Windhorse is three! She is a social butterfly and loves talking to and playing with friends and family of all ages. She has moved on from pointing and asking what the words in books mean, to noticing letters and numbers everywhere. She has just started drawing things which are actually identifiable (a pear, railway tracks…) She loves ambulances and her doctor’s kit. I love her doctor routine (baby dolls or obliging family or friends as patients): Check blood pressure; check temperature; “say aaah”, listen to heart beat, cut the umbilical cord, cut finger and toenails, remove prickles from feet, bandage arms, “OK you are fixed. Now you can go for a burger on the way home.”

L is doing fantastically, looking after them both while I am at work all day.

I am a real-life social worker!

 

 

The world through sunny glasses

Since the last post was about challenging parenting moments, it’s about time I balanced it out with some moments of delight. Here are three of the things I love most about having a two and a half year old Windhorse in our lives.

Having conversations. I had heard about children going through a language explosion, but I still imagined something more gradual, like going from a new word every couple of days to several words in a day. I also expected quite a lot of the new language to be picking up words which we had recently used. It was much more dramatic than that. Windhorse must have stored up a huge collection of words, phrases and sentence structures, and suddenly, one day, the gates opened. Within the space of a weekend she went from mostly pointing and naming things, to saying things like “it’s windy today, I need my hair up.” On the Friday she could refer to a few family members by name or title. On Monday she was referring to all the children and staff at her childcare centre by name. Instead of asking her a series of yes/no questions to find out about her day we could ask her what happened and get answers like “B and I played hide and seek” and the memorable “E found two eggs in my hair.” Now she joins in when we pause for a time of thankfulness before the evening meal, and she has phone calls – pretend and real – with friends and family. It is wonderful to know more about what she is thinking and feeling.

Sweet words. Sunny glasses, funflowers, tuddles.

Playing together. I love that at just two and a half Windhorse is already developing independent interests. Currently she is really into jigsaw puzzles – something that L and I have never been particularly interested in. She is currently enjoying a few 60 piece puzzles but could definitely move on if I could find something that was less of a jump up than 250 pieces. She loves building things with blocks, particularly very tall structures on wheels. She watched some children playing cricket and was fascinated, and has had a go with a kids set at home. One of my favourite games with her is hide and seek. Her hiding has improved – now instead of going to a wall and turning her back on the seeker, she goes into a different room or around a corner, and sometimes climbs under or behind something. When it is her turn to seek she gives clear instructions about exactly where we are to hide. Finding us still results in squeals of delight even when she knows where to look!

Kindness. When she shares her beloved Baa with someone who is crying, or brings a book or a snack to cheer someone up, or kisses one of us better.

Witnessing her imagination blossoming. Suddenly a lump of bread dough can become a ruru, and a lettuce leaf is a boat. Every day she comes up with explanations and stories which surprise and amuse us. How did shiny eggs appear in our garden? The Easter Bunny spat them out of its mouth, of course.

I hope this Easter the children in your life have brought you some moments of delight.