I had the great pleasure of being part of a panel at the Women with Disabilities ACT Annual general meeting last Wednesday. The topic was safe relationships and disability. There was a film called Mirrorball shown which was made a few years ago and looked at attitudes around dating, sex and relationships for people with (mostly intellectual)  disability. The film involved interviewing people with disability and their parents. The thing which struck me was the high level of assumptions of incompetence and deficits-thinking from many of the parents. They almost universally  saw relationships and dating for their kids as a negative and something to be concerned about. The panel included myself, an autistic asexual non-binary person, Katie, a heterosexual cis gendered young woman with down syndrome, Sue, the Chair of Women with Disabilities ACT and a doctor from the Sexual Health and Family Panning Clinic. It was a great discussion and it got me thinking about the way society thinks about disability and sexual relationships and why it needs to change. 

Historically people with disability have been viewed as sexless and childlike or as  oversexed and sexually inappropriate. There is little in between those two views. People with disability are also often viewed as exclusively heterosexual in their interest although in reality a lot of people with disability have a non-heterosexual sexual interest and expression. Sex is often viewed as something to discourage and a problem, rather than how sexuality is thought of for everyone else –  pleasurable and something positive to have in your life.

Another issue is around children. When I was kid in the 1980s, my mum worked in a doctor’s clinic as a receptionist. She told me how what she termed the ‘simple girls’ used to come in once a month and get their contraceptive so they didn’t get pregnant. While that might seem OK to some people, it is actually extremely fraught and problematic. Who makes that decision around controlling somebody’s reproductive rights? Are there any other groups in society who may not be good parents who have forced sterilisation?  Do they do that for people with drug and alcohol issues or people who are abusive? They don’t. This goes to the heart of the issues around sexuality and disability. 

I think the reason there has been and presumably still is control over the reproductive rights of women with disability and that sexual relationships are viewed as a negative relates to that view that people with disability are incompetent and need to be controlled and managed. There is often a sort of blanket view of the incompetence of all people with disability which makes no sense at all. I saw an example of this when I had a mental health worker who had a facial difference. People would speak to her like she was five years old. It used to really upset me and I would say ‘but your thinking and personality are in your brain, not your face!’ I know wheelchair users who get people talking down to them as if they are children and it baffles me. This results in people with disability being viewed as having pretty much the same needs and experience. This results in those view of incompetence and the need to have people doing things on our behalf.

When we look at sexuality another issue is at play as well. The idea of a physical or mental ‘norm’ and disability being a deviation from this. ‘But how can you have sex?’ people might ask incredulously. In society, things that are viewed as sexy rarely intersect with things viewed as related to disability. Sex is presented as the domain of conventionally ‘beautiful’, able-bodied people.  If you are physically, cognitively or mentally ‘different’ then the conventional view of sexiness does not include you. This can result in people being very uncomfortable to even think about, let alone discuss, sex and disability.

These things all point to the sexuality of Disabled people being something of a political act. we challenge the status quo simply by expressing ourselves sexually. It is one of those areas where I wish we didn’t have to be political because love and sex should not need to be. We should just be accepted and respected to do such things in the same way anyone else is. However, as we are not, bring on the activism I say! And this IS an area which requires activism.

On a personal note, I do not undertake sexual activity. I am not a prude and I am all for love and sex if other people are doing it, but I am asexual and have very little interest in sexual intimacy. As a disability advocate this causes me a lot of soul-searching and anxiety. I live a stereotype and it is a really unhelpful one. My asexuality is not something I talk about much and my concerns about it possibly justifying some unhelpful thinking are behind that. However when I stop and think about this, I realise the issue is not me or my asexuality but the existence of the stereotype itself. Asexuality is the way I am and I should not feel ashamed of that. Challenging that stereotype but being true to myself is probably a better approach than trying to hide away.

Things do seem to be changing in these areas, although maybe not as quickly as I would like them to! This is a huge area for advocacy as it goes deeply to the heart of ableism and discrimination. Our loves and relationships as Disabled people should be a cause for celebration and  joy not concern and worry. We have as much right to be happy in a relationship and to enjoy the pleasures of sexuality as anyone else is. We are not sexless children and we do not need control over every aspect of our sexuality and expression. The theme for International Day for People with Disability this year is empowerment and inclusion. Let us be empowered  to express our love and relationships in a way that might not be conventionally beautiful and may differ form the ‘norm’ but which is beautiful nonetheless. Let us be equal in our capacity to love and to be loved. Yes let’s talk about sex and disability and challenge the prevailing views so that people can express themselves and who they are sexually. 

 

I am currently undertaking prep for a medical procedure which is unpleasant anyway but because I have done this three seperate times in the past and it hasn’t worked in any of them, the prep is twice as long and very unpleasant indeed. I have spent the past two days feeling very tired and confused and this is interspersed with drinking the prep solution which is a sensory nightmare requiring a large number of strategies to make it possible. Last time I did this which was only a couple of months ago, it impacted on the absorption of my mental health meds and, had I not made an emergency appointment with my psychiatrist who immediately increased my meds, then I would have gone into psychosis which in my experience can last for years and result in major disruption to my life and be very scary. Added to this I have eight presentations and MC-ing a national awards ceremony coming up in the next three weeks so being really unwell is not on my list of options. 

All off this is a perfect storm of nasty and stressful. So why am I happily sitting at my computer writing this blog post and not standing out the front of Whimsy Manor holding up a sign that says ‘The end is nigh’?? Why am I not filled with fear for the future and misery at having to go through this horrible medical procedure yet again? There are actually a few reasons.

The first is something called radical acceptance. Radical acceptance is not the same as ‘accepting’ that something horrible is OK and in doing so invalidating your experience. It is more about accepting things are how they are and you can’t go back in time and change them. From that position of acceptance you know that you are in control of how you respond to the situation. Regretting the past is the key to misery but radical acceptance is the key to managing life’s difficulties and being a lot happier then you would be if you spend your energy wishing that the past had somehow been different.

The second reason I am doing OK is that I have strategies. Strategies do not fix the issues. I still have to go through the medical procedure, I still have the worry about mental illness and giving all those talks, but strategies mean I can get through the worst of the difficulties. Strategies are individual to each person. They are about practical, sensible activities to lessen the impact of something. Some of the strategies I am using now include putting in place a practical means of making the prep solution drinkable. This is a strategy I have learned over the past three times of doing it so I am using knowledge from past  experience to improve a situation. Another strategy I am using is to practice my talks for early December. The more prepared I am, the less it matters what my brain is doing when I give the talks. 

I am also quite adept at the mindfulness style of seeing things. I try to not get bogged down in the past or terrified of the future but focus instead on the present. What I need to do right here right now. I could think ‘ugh, I have eight lots of prep solution to drink’ and become totally overwhelmed or I can think ‘Right now I have one cup of prep solution. The task at hand is to drink this cup. I shall dedicate my entire focus on doing that well in the present time.’ This might sound difficult but it is in fact not too hard when you start doing it. This makes a difference in pretty much all miserable situations. Once again , ti doesn’t make the issues go away but makes them easier to manage and removes a lot of the suffering element.

I am resilient in that lovely sense of being able to turn adversity into a teacher. This is a great quality and one I would wish for everyone else too. Resilience is a skill which takes time and practice to acquire but it is a very useful one to have. I find it stops me from being terrified of the future.

The last thing I am using to manage is my thinking and attitude. My approach is one of gratitude. I am grateful that I have the strategies I do. I am grateful I have a full-time job with sick leave and that there is no chance that when I return to work on Wednesday I will be told I am fired for my two day absence. I am grateful I have social media so can communicate with friends even if i can’t leave the house. I am grateful that I have an internet connection….I could go on. Shifting my focus from negative to positive is a hard thing to do but it is a skill that has improved with practice. 

These qualities do not fix the problem. Being accepting and resilient does not make colonoscopy prep taste nicer. The thing about all these strategies is that they make something horrible more manageable. They are actually more useful than magically removing the issue would be, because these skills  grow over time. In the past I was terrified of mental illness and getting unwell. Now I am not. I know if I am unwell I can manage it to a point and I know it will pass or at least change in its nature. Strategies give me strength to deal with every issue I face. They are a framework for dealing with life. They are all hard fought and won and came from me getting through some extremely difficult things. I guess that gives value to unpleasant past experiences if they can give value by becoming a teacher. I hope you got some value from my strategies. I do like to share helpful things as there isn’t much use to them inside my head!

*And for those of you who want the colonoscopy prep strategies I use…

1. Make 1 litre of the prep and put it in the fridge until it is very cold
2. Pour 250ml of the cold prep into a cup 
3. Make up 250ml of stock / clear broth which is allowed in the liquid  diet
4. Drink some of the stock and then drink as much of you can of the prep through a bendy straw
5. Drink some of the stock. Keep doing this until both stock and prep are finished. Then repeat the process until the whole litre of the prep  is finished 
6. In between cups of prep it can help to suck on a barley sugar – also allowed in the fluid diet
7. Cultivate a sense of resolve and self-motivation. e.g. thinking ‘I can do this!’
8. Set yourself a reward for an agreed milestone
9. I often gamify the process by reminding myself of how much prep I have got through 

I was the note-taker for my workplace’s Aboriginal and Torres Strait Islander Employee Network annual workshop last week. While I no longer work in Human Resources I still do this role as I really enjoy it and apparently my notes are good and my presence appreciated. Each year a different facilitator has led the workshop. The facilitator this year was incredible. Her thinking resonated very strongly with me. She introduced a lot of different concepts around work and life and one of these really struck me: the idea of lateral violence. 

Lateral violence – as far as I know from a two day workshop – is an experience where oppressed people who have been attacked for generations turn that oppression inwards and instead of fighting the power, fight one another. In relation to Indigenous peoples it  is apparently directly related to the experience of colonisation and happens in countries around the world. The facilitator showed a video from Canada focussing on First Nations people talking about lateral violence. There was also a scripted drama bit which illustrated the ideas – in this case it was mostly about gossip and undermining other Aboriginal people in the workplace. As I watched this an, idea formed in my mind. It may not be a very helpful idea – I’m not sure – but what I saw in the video and the discussion seemed to be a phenomenon I know very well in my own life and have seen in the communities which I belong to.

I would love to be able to say that most of the jealousy, undermining  and snippiness I have experienced in life has come from other people and has been aimed against me but sadly the opposite is true. For many years  I was very insecure around others in the autistic community who were doing well – or at least, appeared to be doing well from where I was sitting. I would feel stressed and inadequate when someone got an award. I struggled to see autistic colleagues in news media, regardless of how important their work was. In fact the more influential their work, the more insecure and stressed I would get. I am a kind person so I didn’t ever want to act on what I saw as my shameful jealousy but it was definitely there. I just figured I was a horrible, petty person. It used to horrify me the thoughts which would come through my mind. I tried to tell myself that anyone’s good work for the community was a good thing but I seemed unable to get past the mean thoughts I had about other people, even though I knew they were essentially working for the same outcomes as I was and making things better for all of us. I saw this as a very big problem and it resulted in me feeling very guilty and sad to be apparently such an awful human being.

In recent years this has thankfully changed. In fact the final nail in the coffin of my poor thinking seems to have been linked to my coming out as non-binary gender recently. This was an affirmation. What the socialist in my history might call a festival of the oppressed perhaps. I finally saw myself as I am and was happy to be entirely ‘me.’ I didn’t need to compete or bring people down because the place I occupied didn’t need such things. I was also in a place of personal and professional empowerment and influence. The facilitator at the workshop talked about lateral violence being an expression of being powerless, a sort of deferred aggression which, instead of fighting to address the oppression, makes people fight others who are similarly oppressed. So lateral violence relates to powerlessness – perceived and real – so I guess it could be said that once I no longer felt powerless I no longer needed to want to bring down people around me and could focus on making positive change. 

I would never wish to appropriate an experience of Indigenous peoples or belittle their experience so I am quite tentative with drawing this parallel between autistic experience and something related to colonisation and the ongoing trauma from that which is still occurring today. However, the experience described in the workshop made sense to me. In my case, when I stopped being closeted as non-binary and started to get some influence and recognition as an autism advocate I could start to focus on the problem which actually needs addressing – ableism and discrimination. I don’t know if this is the same or a similar phenomenon to what was covered at the workshop, but the two definitely seem related.

Maybe this is something that many oppressed groups experience, deflecting oppression and prejudice into an unhelpful place and turning it on one another in the community? I suppose the difference this ‘lens’ of understanding presents is that the issues of jealousy, undermining fellow autistics, harsh criticism and competitiveness which ca happen in our community is more about powerlessness than individuals behaving poorly and being jealous of each other. If this actually is the case, it suggests that increasing our power and respect and pride – as individuals and as a community – might decrease the issue of turning things inwards to attack and criticise one another.

My thinking on this also suggests that to address this issue we need to work together and challenge that wish to be critical. We need to recognise it as another part of ableism and oppression that needs fighting just as much as bigotry, bullying or structural discrimination. I’m just sharing some thinking I guess but the workshop I attended was very unsell and enlightening. (And I took some very comprehensive notes with legible handwriting so, other than learning lots of very helpful information and expanding my thinking, I also did my job well!)

I went to Fair Day today – a celebration of all things LGBTI, Queer and wonderful. I don’t do many specific LGBTQIA+ social things so it was a really nice thing to do. I was with my friend Verity who is a wonderful ally on many different counts. We got to the venue for Fair Day and there was no parking so we drove around looking for a park. We found a quiet street where people had parked on nature strips and found a shady spot on the roadside. We weren’t encroaching on anyone’s driveway or really bothering anyone. As we got up to walk to the event an older man who was evidently very angry came and yelled at us for parking there. Belonging to a number of diversity groups as I do, I was pretty certain that my rainbow shirt and Pride badge were more the problem for him than the parking spot we selected. We were about to get in the car and get out of there and the cranky man’s neighbour said very emphatically ‘You can park in my driveway.’ She had a big driveway and there was another car full of people evidently going to Fair Day parked next to us. The woman said ‘This day is about friendship!’ and she and my friend hugged. It was a beautiful counter to a horrible exchange with someone who I am pretty certain was a nasty bigot. The woman who so gladly offered us a spot in her driveway demonstrated a beautiful, genuine alliance in the face of bigotry. This exchange prompted this post about allies.

There are different sorts of allies, but in this piece I will look at allies in the autism community.

The friend I was with today is also an ally. In fact I know a bunch of them. You can tell they are great allies because they actually listen to and respect autistic people. I think the best test of an ally is how they view themselves. If they feel that they are NOT much of an ally and it seems to be a good indication that their heart is in fact in the right place.

So what makes a good ally? In my understanding, a good, genuine ally:

• Listens to autistic people as a matter of course
• Bases their decisions (which impact on autistic people in their life) on listening to autistic people 
• Recognises that the role of ally is always going to be a support role not a leading role 
• Encourages and supports autistic people to take the lead 
• Asks and doesn’t assume 
• Wants to build their autism knowledge and listens to autistic people without getting defensive in order to do so
• Will challenge ableist views 
• Sees autistic people as equal, valued and worthy 
• Is a genuine friend and supporter to autistic people
• Doesn’t make it all about them 
• Respects that autistic people are the experts on being autistic. 

And what makes a poor ally? In my experience an ally who is not genuine or helpful often does one or more of these things:

• Drives their own agenda regardless of the needs or wishes of autistic people
• Takes credit for autistic people’s work and ideas
• Promotes themselves as an ally
• Is condescending 
• Thinks it is all about them
• Doesn’t listen to autistic people and acts on the basis of not listening 
• Discounts or totally ignores autistic perspectives on harmful therapies (e.g. ABA) and mindsets
• Sees their role as ‘doing for’ or speaking on behalf of autistic people 
• Is untrustworthy 
• Denigrates and belittles autistic people, such as telling cruel jokes or being exclusionary 
• Uses their involvement with autistics as a means to a goal (such as career advancement)  

I have come across both kinds of ally. I actually don’t think the second list describes allies. There can be an issue where people use the guise of alliance with autistic people as a means to an end – so basically they are using us. It can be very confusing trying to work out who is genuine and who isn’t. Another issue is that of nuance as some people fit a little bit in both camps. I am a very positive Jeanette and like to try to steer those people further into the camp of genuine alliance but it doesn’t always work that way sadly. I can usually pick the genuine allies because I want to spend time with them.

Genuine allies can make a world of difference in our lives. We need more of them! I hope that the information in this post will help both autistic people and aspiring allies understand what a positive and  respectful alliance can look like.  

Just a picture of me being me 🙂