Accessing housing

I was just discharged from hospital on Wednesday after seven months of hospital admissions and residential mental health services. During the past seven months I have met a lot of people with mental illness and psychosocial disability. I noticed one issue common to almost everyone I met – housing. I was in a group last Monday and a new patient was there. I told him how I had just moved house and he asked if it was public housing. I said no and he asked if is was mental health housing. I responded that it was not and was I fact private rental. The man was vey surprised. Apparently people with schizophrenia do not live in private rental properties. I didn’t tell him that I was in private rental while the property I own is renovated! In my time in hospital I didn’t encounter anyone who said they owned property. Almost everyone was in public or supported housing. I felt I had a huge amount of privilege to own my own home. It helped put things in perspective. There was one man I met in residential services who lived in a hosing project for homeless men. He kept going home every day to check his room, worried that it had been broken into as most of the neighbours had an issue with drugs and alcohol.

In terms of my current private rental property, I applied for two properties and was successful in the first one. I may have been successful for both as the second one called my referees but I told them I had already accepted the first one. I am presumably a perfect tenant – secure job, property owner, no kids, no pets. But being a perfect tenant makes me feel decidedly uncomfortable as I know so many people who would struggle to secure a rental.

Housing is an area where privilege is clearly evident. It is also often a challenge for autistic people. Autistic people are often unemployed, underemployed or outside of the labour force, meaning real estate agents do not view us favourably. We often have pets or assistance animals which can lead to discrimination too. We may not have a history of renting and we may struggle to find referees. For autistic people accessing housing can add significantly to stress and anxiety. Even if we get a rental it can be stressful. We may worry about damaging the property or being evicted.  In fact autistic people are often very good tenants but we can doubt ourselves.

Home ownership is something many autistic people – and others – are denied access too. Employment issues can make ownership unattainable and if we do manage to buy property it can be highly anxiety-provoking. I have struggled for years with anxiety about my property being damaged by flooding or fire. The anxiety involved has led to major mental illness episodes on two occasions, one of which lasted for over two years and both of which threatened my employment. So even if home ownership is seen as the pinnacle of housing options it can in fact be very stressful while for many it is simply impossible anyway. 

Sharing houses is an option many people take. For autistic people this can be fraught, with bullying housemates or housemates engaging in behaviours which are inappropriate or disrespectful. A share house is usually decided by a short interview which may not be enough time for autistic people to gauge whether someone is suitable to live with. Share houses are generally cheaper than living alone but can be very stressful. When I was younger I lived in a series of share houses. My average tenancy was six months because that was how long it took for me to realise the situation was unsuitable – one housemate moved out with her boyfriend leaving me very lonely, the next was a very sexist man and the next were two brothers who were lovely but who never cleaned up or did their dishes. 

I lived in public housing for five years in the early 2000s. The rent was very cheap but the flat I was in had major issues with damp and black mould and all my neighbours were alcoholics or drug addicts. I wanted to fit in and be social so I became an alcoholic in order to be accepted by my neighbours. I had a woman who stalked me and it was a very stressful time. It was a bit of a trap too given how cheap it was. I ended up getting a full-time job in another state to escape my public housing nightmare. Public housing can be very challenging, particularly living in large public housing developments. 

Housing can be extremely fraught for autistic people and others. It is an issue that I don’t have a solution for and is related to deeper issues in society around poverty and ableism. I long for a world where housing is equitable and accessible. I know I am extremely privileged and am grateful for that. I wish I wasn’t the exception though.

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Why I say “I am Autistic”

I am a member of the Disability Leadership Institute, which is an excellent organisation. I attend a regular Zoom meeting of the group which always generates interesting discussion. Yesterday we were talking about the issue of people’s disability being used to define their identity. Others in the group – who are not autistic – said that it was quite fraught to identify someone according to their disability but I had a different approach. I said that autism actually does define me to a large extent and that this is the experience of many other autistics. Many of us see our autism as an integral part of what makes us who we are.

There is a famous debate around person first and identity first in autism. Do I say ‘I am a person with autism’ or ‘I have autism’ or do I say ‘I am Autistic’? And what does each option mean? I use identity first language (‘I am Autistic’) because I see autism as being a major part of who I am. If I was a person with autism I would presumably be able to put my autism outside the door and collect it on my way out! Most other diversity groups use identity first language to describe themselves. Someone is transgender, not a ‘person with transgender’. Similarly someone is not a ‘person with gay’. The same goes for cultural groups. And to an autistic person their autistic identity is likely to be a deeply held thing and important to their sense of who they are.

Some autistic people do use person first language though, for a number of reasons. While some in the autistic advocacy community think that is a bad thing and that everyone should use identity first language, I tend to think that the way someone chooses to identity is correct for them. I don’t like people telling me that I should identify as a person with autism though. This happens a lot and usually from well-intentioned people with little exposure to the autistic community. There are few things more infuriating than someone telling me how I should identify myself! When people do this to me they usually get a bit of a lecture which hopefully means they don’t do the same thing to someone else. 

All this is bound up in discussions around disability. Is autism a disability? Many would argue that it isn’t. For me I view autism as a disability through the lens of the social model of disability. This means that we are disabled by the attitudes and acts of others. While this isn’t true for everyone, I do not feel particularly disabled by my autism itself but the attitudes of others are very disabling. However I am aware that there are others who see this differently. There are also identity considerations around disability. Some people use ‘Disabled person’ (note the capital D) and others use ‘person with disability’. These are often used interchangeably,

I feel that positive autistic identity is part of autistic pride and as such is a political thing. Autistic people are oppressed and anything which gives us a sense of pride is something of an act of rebellion. It took me many years to get to the place of pride I currently occupy. I was in denial about my autism for seven years and even when I did accept my autism I was pretty doubtful and ashamed about the whole thing. It took me writing my autobiography in 2005 and its subsequent publication to embrace my autistic identity and feel a sense of pride. I am now very much out loud and proud. I see autism as a key part of what makes me who I am and I like and value my autistic identity.

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About identity

I have been thinking a lot about identity lately. I come with a bunch of elements of identity – non-binary, autistic, schizophrenic, advocate, writer, person with a difficult past, the list goes on. Identity is all about what make us us but it can become quite loaded and political. We live in very political times, although I suppose that could be said of all of human history. Our political and social views form part of our identity. I shared a post the other day saying that ‘in this house Black lives matter, love is love, we believe in science, no human being is illegal…’ and a few other descriptors of inclusivity. I was very aware that posting this would identify me as someone who espouses a left-leaning, social democratic sort of view. Surprisingly I had no backlash against the post (I always expect to get trolled when I post something like that). Potential trolls aside, the post asserted a part of my identity and drove me to write this post.

Much of my identity is focussed on the divergent groups that I belong to. Many others who belong to ‘diversity’ type groups find that these inform their identity. Being in a divergent group often leads to shared experiences with others from that group, leading to a shared sense of identity. A key thing to know about this is that however a person identifies is correct. Gender identity is a case in point.  I am non-binary and that is not up for discussion, even when I wear a dress!  My identity is my own. How a person identifies in terms of gender is  correct and not up for disagreement or debate. Even if you think someone looks ‘male’ or ‘female’ take your cue from how they identify a rather than making assumptions.

The same goes for autism and identity. Many autistic people – including me – identify as autistic rather than as a ‘person with autism’. I cannot count how many times well-meaning people have instructed me as to how to identity and tell me I should say ‘person with autism.’ This is absolutely infuriating! I know who I am and someone spouting something they learned doing whatever disability training they have is not going to change the fact that I am a proud Autistic person! This is true of people with other disabilities too. It is never OK to tell someone how to identify themselves. Note to well meaning people, autism is not an add-on that I can choose whether to be ‘with’ or not be ‘with’. 

My identity has a history to it. When I was a young twenty-something I found myself in some pretty dire circumstances. I was a prisoner and in order to survive I learned to act like a prisoner. I masked and camouflaged like you wouldn’t believe. Then when I was 26 I found myself wanting to rejoin non-criminal society. I wanted to get my personality back but I had masked for so long I couldn’t remember who I was. I figured I should decide what my character should be. I observed qualities I liked in others and worked out who I wanted to be. I think part of my original character was still in existence, buried under a bunch of nasty stuff but a lot of the Yenn I know now came about through that conscious effort to make a character and identity for myself. I largely picked my identity which is a hard thing to do but quite a liberating thing to do as well. Since then I have added my autistic identity, my non-binary identity, my identity as an advocate and author and a range of other elements to what makes me who I am. 

Identity is a key part of what makes every one of us who we are. It is important to respect people and refer to them in the way they identify. 

How a person chooses to identify is their identity. It is not up for discussion or disagreement. Simple as that.-2

I got it wrong – making mistakes and perfectionism

Last weekend I posted a meme on strategies for managing anxiety. It was premised on the idea of banishing anxiety-provoking thoughts and not letting them in the metaphorical ‘door.’ It is a strategy I use to good effect and I wanted to share it with my social media family. Sadly it backfired and I managed to upset quite a few people including a friend who is now an ex-friend (not just due to the post but it was the catalyst for ending the friendship). 

I was extremely upset that something I had intended to be helpful had in fact been damaging. I was accused of being dismissive and stigmatising of people with anxiety issues – fairly extreme things to level at someone who has anxiety issues myself and was trying to be helpful. It showed how social media can backfire but it also showed me how much of a perfectionist I am. I was utterly horrified that I had made a mistake and that I had upset people and that something  I had produced had been seen as stigmatising. While I talk about making mistakes as an essential element of building resilience and ‘failing successfully’ it would appear that I didn’t want to make mistakes myself! 

When I saw the comments on my post I was spending the day with a friend who is an occupational therapist and works at one of the psychiatric hospitals I have been a patient at in recent months. She said I was going through a shame spiral and the I was coming from the position of an external locus of control. While I didn’t want to admit it at the time she was right. And for those not in the know, an external locus of control is where you feel like things are happening to you and you have no agency or ability to control or address them. Thankfully I moved past this but there were repercussions. I didn’t want to schedule any more memes in case I upset anyone. I created a few and quickly deleted them. I lost all objectivity when it came to my advocacy work. Someone booked me for a talk and then said I needed to add references to my slides. It threw me into a self doubt tailspin – My talks were not academically rigorous and had no value (according to my doubt-filled brain). I am still in this space a bit. It feeds into impostor syndrome and perfectionism. I don’t want to make another mistake.

The funny thing is that the meme which caused the issue had mostly positive responses. There were three negative comments and two of them I addressed through discussion with the people who raised the objections. The week before the offending meme I had two other memes that went absolutely viral and reached hundreds of thousands of people. Did I focus on that? No, I focussed on the one comment which led to the end of a friendship. Perspective is a good thing in this space.

As autistic people – and I suspect others too – we tend to be perfectionists and fear failure and mistakes almost more than anything. We can fixate on things which went wrong twenty years ago – I know I do. It is hard not to focus on the errors but it is possible to do so. It is also possible to learn from the errors – both the actual error itself and the fact that we made an error – and what that may mean. Everyone gets things wrong and it is OK to get things wrong as long as the consequences aren’t death or injury. If you are a surgeon or an airline pilot you need to not make mistakes but for the rest of us it is actually OK to get something wrong on occasion. I learned from my meme issue that it is worth seeing if there are interpretations of my memes which are not that which I intended before I post them. I wish I hadn’t made a mistake but I did and the world didn’t end and I learned something.   

I will never be perfect. That is absolutely OK. I just strive to be the best me I can be and that is enough.

“You don’t speak for my child.” No, I don’t

One thing which autistic advocates often experience is certain parents saying to us that ‘You don’t speak for my child.’ There are a few meanings to this but the main one is the implication that an autistic advocate has something called ‘mild autism’ as opposed to the child’s ‘severe autism.’ Advocates – apparently – have no shared experience with ‘severely’ autistic children. As such everything we say about autism is wrong and based in some kind of privileged position of being ‘high functioning’. This is all sadly very wrong and does not help autistic people – kids, adults, advocates – any of us. 

I do need to include this caveat: I do not think the allistic parents who tell me I don’t speak on behalf of their child are the enemy. I think we are all on a journey to knowledge and discovery and I would invite those parents to read my words and see if parts of what I say resonate with them and help them along their own journey of autism knowledge.

I will start by saying that I actually don’t speak on behalf of anyone’s child. I don’t speak on behalf of anyone at all. I speak on behalf of Yenn Purkis in the hope that what I say will resonate with others and help them. I have no authority to speak on behalf of others and neither does anyone else. This also begs the question of who actually DOES speak on behalf of the autistic child? Presumably the allistic parent accusing me of doing this probably thinks that it is OK for them to speak on behalf of their child. To my mind the child being able to express their own wishes or learn to do so in whatever way that may entail is best.

I want to talk about functioning labels. These are things like ‘high functioning’, ‘low functioning’, ‘mild autism’ etc. Functioning labels are not part of the diagnostic literature for autism. They are an add-on and not a very helpful add-on at that. I attended a presentation by the wonderful autistic advocate and academic Jac Den Houting once. Jac put up two slides. Each listed a set of attributes that autistic people commonly have. The first slide were things that would be captured in the idea of ‘low functioning’ and the second things which would be described as ‘high functioning’ attributes. Jac said both were attributes of autistic people. They then went on to say that both slides were descriptions of things which Jac themselves experienced. I thought this was a fantastic way to address the issue with functioning labels. One person could have a whole range of attributes which fluctuated over time. I know that I have some experiences of being non-verbal, being catatonic,  having major ‘meltdowns’ and yet I usually get the ‘high functioning’ label. Basically the functioning labels are unhelpful at best and are often damaging and traumatic. The functioning labels are essentially meaningless. 

Giving children functioning labels dooms them to either having no expectations that they will achieve much or of being denied access to assistance due to being ‘too high functioning.’ Just because someone is doing well at school does not mean their mental health is going well or that they are coping. The ‘mild’ autism label needs to be confined to the dustbin of history as it means people miss out on supports and that they are expected to act like an allistic person. I saw a humorous meme once that talked about having spicy autism as opposed to mild autism. I really like that and my take on it is that I have spicy autism with a side order of curly fries! Seriously though, one of the issues with the functioning and ‘mild’ labels is that they suggest a deviation form a ‘norm’ of being. Autism is seen to increase in severity the further it deviates from the allistic ‘norm.’ That simply isn’t how autism works. We are not defined by how close to allistic we are. We are valid as we are, as our own beautiful Autistic selves. We are all different and we cannot be plotted on a map of how close or far from ‘normal’ we are.

Often the people telling me I don’t speak on behalf of their child have kids who do not use verbal speech. The ability to speak is bound up with stigma around autism. This baffles me because there are so many effective Augmented and Alternate Communication (AAC) devices which given autistic people – and others – the capacity for communication. Some people will not get an AAC device for their child because they are told it will stop the child from speaking. I would say that is really unhelpful and will lead to a very frustrated child being denied the access to communication. Verbal speech is not the pinnacle of communication. Communication is about being understood and understanding, whatever that may look like. There are some great autistic advocates who use AAC. I wonder if they get told that ‘you don’t speak on behalf of my child.’

Mild autism'... Ugh! Who gets to decide if my autism is ‘mild’ and what does ‘mild autism’ even mean? Just ditch the functioning labels. They do more harm than good!-2

Gender diversity and autism – reflections

Today is IDAHOBIT or the International Day Against Homophobia, Biphobia, Interphobia and Transphobia. It is also very nearly a year to the day since I legally changed my name. I thought as such it is a good day to reflect on all things trans and autism – well the trans and autism things which relate to me personally at least! 

I changed my name primarily due to my gender identity as a non-binary person. My dead name is very gender-loaded and I never felt it described me. I came out as non-binary in 2018, changed my name unofficially in February 2019 and changed my name legally in May 2019. I love my Yenn name and knew it was the right thing to change it the instant I did. I also love my gender identity and found coming out mostly a liberation and a means of empowerment and freedom. 

I want to use this post to reflect on my life as a non-binary autistic advocate. When I came out, a trans and autistic friend said I would discover who my friends are – and aren’t – through coming out. This is 100 per cent true. Some people who I thought were conservative and judgemental about gender and sexuality were really supportive and others who I thought would be on side ended up on my blocked list due to their transphobia.

I did a coming out vlog last year and posted it on YouTube with no issues until the third instalment was attacked by a number of trolls. I was shocked. Why would all these strangers care about my gender? I turned off the comments for future instalments of the vlog. I had people tell me not to talk about gender on my neurodiversity page because it didn’t relate to autism. I had a troll insist being trans was a mental illness. It got to the point that I worried about posting gender-related material in case more trolls attacked me.

Misgendering has been an ongoing stress. My pronouns are they / them / their which many people have an issue with. In fact, like many trans and gender diverse people, the worst culprit at misgendering me in the beginning was me as my pronouns and name were new to me as well!! I no longer dead name or misgender myself but lots of other people still do. It is hard to know intent and whether people are being knowingly disrespectful or just making a mistake. A lot of people blame me for them getting my pronouns wrong as it is apparently preposterous to ask people to refer to me as they / them / their. In realty my pronouns are not actually about anyone other than me. The sense of respect and kindness I get when people use my correct name and pronouns is immense.  

I did find a great community of fellow autistic and trans and gender diverse people. My being out and open as a non-binary autistic advocate seemed to give other trans and gender diverse autistic people a sense of empowerment and respect. When I came out I had something of a profile in the autism community and this made my coming out a big positive. Lots of autistic people told me that they were non-binary too. It was awesome and affirming, 

I found that my existence was quite political. I didn’t want this. I wanted a world where my autism and gender identity were just attributes like having brown hair or liking purple. Instead my identity took on a political element. This gives me the encouragement to help make a world where gender diversity is simply an attribute rather than a reason for people to launch ideological attacks on me and other trans and gender diverse people.

I have been involved in some writing on autism and gender diversity. I wrote a chapter for a book called Spectrums which Maxfield Sparrow is editing and I wrote a handbook for trans and gender diverse autistic adults coauthored with the awesome Wenn Lawson which is due out next year. Despite these books I do not feel like I am an expert on autism and gender diversity in the same way I feel an expert on autism and employment or autism and mental health. My expertise in the gender diversity space is almost all based in my own personal experience. That being said the book and the chapter are good and go beyond my own lived experience so maybe I just have a touch of the impostor syndrome.

I love my gender identity. I love knowing that I am non-binary and that is a perfectly valid and laudable thing to be. I had no language for my gender when I was younger but I knew I didn’t fit within the boy or girl binary. Being non-binary is a blessing for me. I know who I am and where I fit and that is a liberation in and of itself.  I am grateful that there is now language and understanding around gender diversity and that I am an out loud and proud autistic non-binary person. It is a good way to be.

 

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Yennski at the Sydney Gay and Lesbian Mardi Gras in 2019

Autism and the social contract – or how I chose my own character 

One thing which has surprised me in recent months is how compliant most people seem to be in relation to social distancing and quarantine. Of course there are people who ignore the directions but they seem to be a minority. This got me to thinking about the social contract and concepts like ethics, morals and rules.

I have had issues with understanding consequences and breaking the social contract in the past. However I am someone who is now highly ethical and I aim to leave a positive legacy when I leave this world. In my twenties I was highly unethical. I use to engage in physical violence and stole things and was seen by everyone I knew as a criminal. Yet within a year of leaving that life I was enrolled in university wanting to get a degree so I could get a job and give back to society in the form of paying taxes. I started to recognise my parents’ love for me and tried to heal the wounds in our family caused by my behaviour in the then recent past. I did a 360 degree change from criminal to moral person. Twenty years later and I am a many times awarded ‘pillar of the community’. I even feature on a mural depicting local heroes near where I live. How on earth did this all happen and what ideas enabled me to change? And are autistic people more likely to break the rules and if so why?

For me there were a few things competing in the battle for my engagement with the social contract. The reason I initially got involved in illegal activity was an older man who groomed me as him partner in crime. I was very naive and didn’t realise where I would end up with this man. It was just nice that he paid attention to me and wanted me to do ‘exciting’ things. Another issue was that I had very little understanding of consequences. I knew right from wrong but I couldn’t understand how someone would feel if  did something unpleasant to them. It wasn’t a lack of empathy so much but that is what it looked like. As life went on I got a mental illness and self-medicated with drugs. My delusions told me that prison would be a depression cure so I tried to go to prison which actually isn’t all that difficult if you put your mind to it. I sent three years on and off in prison. I was released in February 2000 and decided to change my world for the better. 

The first thing I addressed was the consequences issue. I related any actions I felt like taking with others back to myself. I thought if someone did this to me how would I feel about it? The results were magic. This addressed the consequences issue to the point that I internalised it and after a short time no longer needed to consciously step it out in my mind. I just knew. During my time in prison I had masked a lot in order to survive. I masked so much that I lost any sense of my own identity and character. I didn’t know who I was. While that sounds unpleasant it was actually really positive because I could choose what attributes I wanted for my character. I decided to be ethical and respectful. I decided to be thoughtful and empathetic. It was a privilege to choose who I would become. 

So what about other autists? I think that consequences of actions can be a big issue for a lot of autistics. While challenging this can be addressed – as demonstrated by my example, I think autistic people can get involved with toxic and dangerous people in order to be accepted and have ‘friends’. A lot of us feel very isolated and will respond to offers of friendships or relationships which may in fact be harmful. A lot of autistics have issues with drugs and alcohol as self-medication or for social connection. This can be really difficult to overcome for anyone but especially for autistics. I stopped needing drugs when my life improved and I didn’t need to fill the void in my soul with substances. There are some good resources for autistic people who have drug and alcohol issues.

I think most autistics – like most people – are willing and happy to engage with thew social contract but for some people it can be difficult. I think we need to move beyond ideas of ‘good’ and ‘bad’. The majority of people who break the social contract do so for real reasons other than them being ‘bad’ people. But when someone does break the social contract it can have negative impacts on that person, their family and friends and any victims of their acts. We need the social contract, even if some laws seem unhelpful. We also need to question laws if they are damaging to people – and in many societies protest is available to do this. But I think the basic ethics which keep our society cohesive are a good thing and we do better adhering to them.    

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Yenn on mural in Canberra

Escaping the asylum – my journey with institutionalisation

I am currently sitting in my lounge-room typing this post. Presumably a fairly uneventful occasion – writer writes something in their own home. But for me this is a very big deal as I have not written a blog post at home for many months. I have been in psychiatric hospital and other residential care since late October 2019 save a week at home in December which ended disastrously. I am now on overnight leave from hospital. I have been coming back home for a few hours every week for the last month or so. I am quite excited about being home but I am also terrified. The main reasons for that are my irrational anxiety around home maintenance but also anxiety around leaving an institutional setting.

I have a long history of institutionalisation starting in the late 1990s when I spent several years in and out of prison. While in many ways I hated prison, I was also drawn to it because of  the order and routine and the rules. Rules are very comforting to me. They make sense of a confusing world. A world with rules and order and discipline is a safer world for me. This may seem odd because I broke the rules in order to go to prison but it was a bit more complex than that. I think I broke the rules in order to feel the impact of the rules as a consequence of breaking them. And prison has two sets of rules – the ‘official’ rules and the unwritten ones which the prisoner follows (don’t snitch, don’t hurt kids etc). I am usually not that good at figuring out unwritten social rules but in prison I figured them out as a matter of survival. 

Time in prison was conflicted time. I didn’t want to be there but whenever I was released I would break the rules again. It took me a long time to move beyond the need for that institution,

My recent experiences with hospital are similar to my experiences as a prisoner but thankfully with a more productive and positive focus. I spent six years out of hospital and had a taboo in my mind about going back to hospital. I sought out positive things and tried to stay healthy for fear of becoming institutionalised one more. When I finally ended up in the psych ward last October I was so unwell that I was unaware of what was happening. I slipped easily into the institution. It took away the things I couldn’t do – cooking, cleaning, going to work, social interaction. I was safe in hospital.

At the same time I was getting relief from everyday challenges, I started to fear living in my own home. My home would make me unwell. I told doctors that I couldn’t be there – and I was right, I couldn’t be here. It was too hard. I would get really anxious at home and become psychotic. I wanted someone to take my home from me. I longed for the institution. I was sent to a rehabilitation hospital and was reprieved. Patients could stay in this hospital for three months or more if they needed to. I kept worrying about my discharge date. If I went home I wouldn’t cope. The doctor said she wasn’t going to give me a discharge date. I would know when I was ready. All the staff reassured me that they wouldn’t make me leave before I was ready. 

I actually think I am close to ready to go home. Being home is anxiety provoking but manageable. I feel better in myself, more ready to rejoin the world. I am doing anti-institutionalisation activities like going to work part-time and doing autism advocacy work. The hospital staff tell me how well I am doing and I am doing well. I hope today is the first main step in my journey towards independence. I think autistic people can be more prone to institutionalisation. Being aware of it as a risk and taking steps to address it are really important. On reflection I am much happier when I am not in the institutionalisation space.         

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Things ableists say

I was lying in bed last night thinking about things ableists say and thought I would turn them unto this blog post unpacking some of them.

Here goes…

“You could pass for normal”

Lots of issues here. Most Disabled people I know would find this statement very offensive. It basically states that there is a pinnacle of existence called ‘normal’ and those of us who don’t fit within it are broken and deficient. We are not. We are valuable and worthy as we are.

“How long have you been wheelchair bound?

Lots of issues here too. A wheelchair means mobility. It is a positive and useful thing to have. Imagine not having one. Also ‘wheelchair bound’ ties in with some very deficits-based attitudes around disability.

“Don’t say Autistic, say person with autism”

The number of times well-meaning people have corrected my identity-first language is very large. Despite what those well-meaning people think, ‘I am autistic’ is perfectly valid and many of us find it empowering. The same goes for ‘Disabled’ which many people find empowering. When it comes to identity, the way a person identifies is their identity, simple as that. People should avoid questioning others’ identity.

You don’t look autistic“ 

Autistic doesn’t ‘look’ like anything, Autistic people all look different. You cannot tell a person is autistic through looking at them. We are not ‘one size fits all.’

Assuming all Disabled people are asexual

This is widespread and is not OK. It infantilises us and makes us perennial children which we are not. Many Disabled people have a healthy sex life and want a relationship. I tend to think that being in a sexual relationships is almost political for Disabled people but it really shouldn’t be. It should be a given that Disabled people can be in a relationship and / or have sex if they want to.

Assuming all Disabled people are cis gender 

Once again the idea that Disabled people are all cis gender goes to infantilisation and paternalism. We are apparently not able to consider our gender identity and know our gender identity but in fact many Disabled people – and particularly neurodivergent people – are trans and gender diverse. 

“We are all on the spectrum somewhere”

An autism-specific one and a highly problematic one. People often say this with good intentions but it is really unhelpful. It is dismissive of autistic reality and experience. It is invalidating and if it were true then there would be no autism spectrum because it would just be called being human.

Shaming someone who has a car park sticker but is ambulant 

Many people have an accessible car park sticker but do not use a wheelchair or other mobility aid. These people may have invisible disabilities but ones which are very real and mean they cannot walk across a big car park. They may be shamed by others, once again often well-meaning people. This shaming is never OK. 

“He must be lost” (aimed at wheelchair user in psychiatric ward)

Many people think that a person can only have one disability. I am currently in a psychiatric ward in a large university hospital. One of my fellow patients is a wheelchair user. I heard someone say about him ‘oh he must be lost’, presumably thinking a person only has a quota of one disability each! 

“She’s so articulate” (after speaking with Disabled person who is still standing right next to them) 

This kind of situation is infuriating. Once again it goes to infantilising and patronising Disabled people. It also relates to having a very low opinion of that Disabled person (who happens in this example to be me) and their right to be treated with respect. 

“You are such an inspiration“

I think I saved the worst to last. ‘Inspiration porn’, where disabled people are viewed as being inspirational simply through doing everyday things, is rife. I’m going to let the late Stella Young address that one in her excellent TED talk https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en 

 

I don't axctually want to be 'inspiring.' In the disability space 'isnpirign' is loaded with unhelpful and sometiems quite patronising meaning.

Thoughts for uncertain times

Content warning: COVID19 / Coronavirus 

We are living in uncertain times. This is something of an understatement with information from official sources changing every day. Less reputable sources of information abound and in some cases elected officials are providing unhelpful advice leading to confusion and distress. 

Autistic people generally find uncertainty very stressful. We are often told everything will be OK and there is no reason to stress but in the current climate our anxieties are seen as justified and people who would once have told us not to worry are now just as worried themselves.

I struggle to watch the news. As I am in hospital the news is on quite a lot and often on channels which are alarmist and unhelpful. I found myself watching A Current Affair the other day – something I regretted for the next few days! We in the First World are not used to national or global uncertainty and most of us are ill-equipped for the world we now find ourselves in. 

One interesting thing about all the uncertainty is that I feel I almost have an advantage over those who have never suffered from uncertainty, worry and anxiety. I have been catastrophising since I was a small child. I know how it feels and I have a few strategies which I am happy to share with others. For many people COVID19 is the first reason they have had for mental ill health. I can come along with my depth of experience and support these people who are new to problematic anxiety.  

So what do I use to manage my anxiety at the uncertainty?

  • Focus on what is happening in the here and now and only deal with what needs to be dealt with.
  • Imagining my worry is a person knocking on my door. I can’t stop them knocking but I can decide whether to let them in or not.
  • Immerse myself in my passionate interests – in my case that involves autism advocacy and cats. I don’t presently have a cat but I do have some talks to prepare and a book to write which are very helpful distractions.
  • Use other forms of distraction to take my mind off the worry. Watching TV and movies works well in this regard.
  • Connect socially – in the current climate that will usually involve social media or Zoom meetings but it is definitely still social connection. 
  • If I am feeling highly anxious, do some deep breathing or meditation. Anxiety is primarily a physiological response so things which address it in a physical way are likely to be effective.
  • Go for a walk. Exercise is great for anxiety.
  • Tell myself that I cannot fix COVID19 but that I can decide how I will respond to the uncertainty. This skill is part of radical acceptance and the idea of an ‘internal locus of control’. Basically it means accepting that what is happening is beyond your control, but that how you choose to respond to it is not. It is a strategy around taking control and having agency. In my experience being able to do this is the pinnacle of psychological interventions but it is often very hard to achieve.
  • Create a routine 
  • Make lists and inventories, categorise things.

There is no reason that the uncertainty needs to destroy us. It is like a nasty by-product of the pandemic but it can be managed and addressed. All these strategies can be helpful to counter the impact of the uncertainty. And the pandemic will not last forever. There will be answers to the questions even if we don’t have them now. This will change.  

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