The other day I was having a conversation with someone I have known on and off since my teenage years – before I was diagnosed. I was talking to her about my life and work. She asked me an odd question – ‘Do you work from home?’ I said that no I work in an office building with my colleagues. Then she asked how I got there. I told her I took the bus. Suddenly that terrible look came across her face. I’m not very good at reading looks but I usually I know this one all too well. She looked at me like I was a confused toddler and said ‘oh well done for getting the bus!’ as if of all my accomplishments that was the most impressive. The fact that the skills needed to do the work which I go to after I get off the bus are hard to acquire and that I am a highly valued employee in my workplace alongside very accomplished people was irrelevant. To this person I think the cogs in her brain which process autistic achievement may have seized up after the bus bit hence her not mentioning the work I do and all my other various activities. I was an impressive version of the autistic stereotype of not being able to use the bus. This kind of paternalism when applied to achievement by Disabled people is known is inspiration objectification – or as the late, great Stella Young aptly termed it ‘inspiration porn.’ Inspiration porn means calling people with disabilities inspirational on the basis of their disability. So my using the bus was inspirational because autistic people apparently find it hard. I think most non-Disabled people find relationships hard but I never go up to a couple that has been together for ten years and look up at them soppily and exclaim that they are an inspiration! (although after writing that I am a little tempted to…)

A non-Disabled person going to work or university or using public transport is almost never seen as inspirational but for those of us with pretty much any difference or disability, doing these things which are part of our daily life is somehow considered amazing and worth celebrating despite it being something we do anyway. It is like praising someone for eating breakfast!

One problem I come up against with this is that, as someone who overcame homelessness, addiction, abuse and violence and three years of prison – long story. Look at my autobiography for more details if you wish – that there are parts of my experience which actually are inspirational. I don’t mind when people compliment me on that as yes, kudos to me for being awesome – but catching the bus isn’t really up there with overcoming addiction!

I often find myself having to mentally wonder whether a statement about my life has been paternalistic  and inspiration porn-y or is a genuine appreciation for some impressive thing I have done. I find that usually the gut reaction is right – if it feels like ick, walks like ick and quacks like ick – it’s ick! People tell me I inspire them quite a lot these days and it always confuses me. Wouldn’t it be nice of condescending people hadn’t ruined the term inspiration for me and everyone else quite so thoroughly that I constantly question genuine respect and appreciation?

I think that most Disabled people probably find this stuff infuriating and insulting. It seems to come from the place that someone sees us as somehow lacking and broken so that anything we do is seen as inspirational. It is like we are children well into our adulthood. Like a performing seal – ‘oh she took the bus! How exciting, Her parents must be overjoyed’.

I don’t want to be a performing seal or an eternal child. I have a lot of work to do and don’t need to waste time explaining this issue to people. I have many, many things to say and do for which I need no ‘inspiration’ validation. In many ways I am a very strong person but this stuff makes me feel diminished and sad. It is an insult to me and flies in the face of pretty much everything I do and say in my advocacy work. The genuinely impressive things we do can get ignored, eclipsed by the attitudes which focus on the tabloid moment, the metaphorical dog playing football.

The stuff makes me and many others angry. I think it should make people angry. I have been thinking about prejudice and bigotry lately. I know some people who are not intentionally hostile at people from different groups but their bigotry comes out in other ways. The worst problem I see with this is that it is almost impossible to call someone on this and get them to understand what the problem is. It often makes little difference to say anything to them and just adds to my frustration and their feeling of being attacked when they ‘don’t hate Disabled people…’ Paternalism and inspiration porn seem to me to be clear examples of that. They are expressions of ableism and a sense of superiority  but not through using any noticeably overt hostile words. I would like for more attention to be paid to this covert bigotry because I for one am very sick of people discounting my Autistic and Disabled experience and focussing on what is essentially business as usual in my life and not realising the meaningful things I have done.

This is the link to Stella Young’s wonderful TED talk on the topic of Inspiration Porn. Please watch it if you get a chance. I would like it to be essential viewing for anyone working with or for us. https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much

 

I had a realisation today; a very good realisation. It centred around the idea that a distance of eighteen years was enough.

I think I probably need to fill in some detail here. Those of you who have read my autobiography which was published in 2006 will know that for around three and a half years, between the ages of 20-25 I was a prisoner. When I speak of people about this now they are kind and understanding – there were mitigating circumstances, they say. They explain that my sad career began because I had a boyfriend who was much older than me and a dangerous criminal, I was bullied in school, I didn’t understand consequences….while these things were probably all contributing factors I have to take more responsibility than this. Crime is a social issue certainly but there is always the element of personal choice. I made bad decisions, I hurt people – physically  and emotionally. My parents went through the kind of hell I can scarcely imagine and yet they stood by me after every stupid destructive decision and supported me when I eventually decided to make my life something less horrific.

My criminal history is now between 23 and 18 years old. When I decided to change my life, this concept of the distance in time was a constant presence in my mind. One year out and I had enrolled in university, but the man from the autism employment service who used to be a police sergeant told me he couldn’t work with me because I would go bak to my old ways. Then another police sergeant told me, a mere six months after the employment service person, that my dodgy days must be over – it was very conflicting to have such different assessments. Which was right? I thought it must be up to me. I carried that huge and rather useful sense of responsibility with me for so long, I was  – and remain – the epitome of ethical.

It was three years out and I was in university trying to change my little bit of the world for the better by learning and putting education and time between me and what I now saw as my ‘past’. It was five years out when I met Donna Williams / Polly Samuel. She told me I needed to write my story for all those parents of autistic young people in similar circumstances to where I had been so very very recently.

It was six years out when that book was published – my positive point of no return. But still every day that clock counted each minute between me and prison. I believed it wouldn’t take a lot for the Jeanette who I was terrified of to come back. I was afraid of my mental illness recurring and dissolving all those inhibitions and  barriers that I kept around myself as a fortress against the oh so recent past.

It was seven years out when I got my public service job. The pre-employment police check filled me with anxiety and the saving grace was probably that lovely book I had so recently written. I was amazed and relieved when my new employer said ’yes’.

It was ten years out and I needed to get a working with children card – more anxiety and soul searching. Between eleven and sixteen years out people told me it didn’t matter. It was ancient history. But to me it was almost clearly visible if I just looked down the years. Seventeen years out – last year – and I made a decision not to include the ‘where I came from’ slide in my talks in addition to  ‘where I am now’ slide. It wasn’t me but even then that history was still tethered to me by an invisible chain.

In September last year 18 years came around. I didn’t think much of it. Another day. The first time that I hadn’t devote the day to reflection and anxiety. And today I knew it was gone. My memory of that time is all that remains. I am not held down by it. It does not define me.I understand now what was meant when my friends told me it was ancient history. They were right but it took me a little longer to catch up to their understanding. After eighteen years I am finally free. It is lovely. I plan to enjoy freedom. It was hard won and not just by me. My path is an unusual one. Sadly so many people get caught in that web and never escape. There is nothing hugely special or impressive about me. I think the things which enabled me to escape that world were the support of my parents and a few others. My own discipline and determination helped – most social extroverts wouldn’t deliberately throw out their address book but in 2000 I knew I needed to do that because it contained people who were still stuck. I am quite good at willpower when I need to be. I have a fair brain but  think the key is that I do to blame or hold grudges. I never have really. Some truly horrific things happened in that time and sadly many of them were the result of actions taken by those supposed to be taking care of me. I have always said I live in the moment. Trauma will follow me but when it comes to specifics I can move past it quite well. I have never held onto hatred of anger for any of the things which happened. When they were no longer happening I moved on. The only anger and blame I held onto was against myself. That one took eighteen years to overcome. I am happy to bid it farewell.

Being free is lovely. This afternoon I realised the distance in time is no longer relevant and what happened in the 1990s is still there but I’m not. I finally knew I don’t need it and it doesn’t need me. It is as gone as a childhood toy abandoned in adulthood as no longer needed, relevant or interesting.

An actual glimpse at the 1990s – 23 year old me and my Dad

I was actually asked ’Do you live at home with your mummy’ when I was 39 years old. The question was asked by a person I would have hoped would know a little more about autistic adults and our varied experiences of the world. The person asking me that was an employee of a large autism support organisation during a conference I was attending as a speaker. It was certainly an odd sort of question but sadly not unique or even all that unusual. As an autistic person I am quite used to these kinds of questions. They come from a place of paternalism. Paternalism is experienced by people from all sorts of groups. It is insulting to have assumptions levelled at me that bear no relation to who I am or what I do.  My main concern with this stuff is that it often betrays a power dynamic where the person making the statements thinks the other person is somehow  less valuable or worthy of respect than them. I live in a world where everyone has equal value and worth and so find paternalist attitudes offensive beyond my own personal annoyance.

Paternalism often seems to come from the view that autistic people are eternal children. In fact the etymology of paternalism come from a word for father. A father – in traditional terms at least – is viewed as the head of the household. They make the rules, they are where other family members go for wisdom and advice. The father goes to work and makes money. Simply put the father has the power. This is precisely what I feel when I face paternalism – that I am disempowered and seen as unimportant. I feel like I am a child being parented.

Paternalism also encompasses things like controlling and ablesplaining. Statements like ‘Are you sure you want to buy that?’ Doing things to ‘fix’  elements of an autistic person’s life which are actually working OK and  ‘helpful’ unsolicited translation of what an autistic person is saying to another person. These things are infuriating and frustrating.

Paternalism belittles our experience. I don’t know a single person who likes it. Acts of paternalism are like someone taking on an unwanted role of parent and wanting to help you by ‘looking after’ you when actually that isn’t something  you need or have asked for! It is a form of invalidation – you are not seen as your adult self but as somebody’s child. I am yet to meet a human being who has expressed an interest or liking for being treated paternalistically.

To the person doing the paternalism they are often missing out on you being who you are – your skills and attitudes insight and wisdom.

Another sort of spin-off issue from paternalism is one that if anything I like even less – tokenism. Sadly I have been on my fair share of committees where it is clear that I am there so that the organisation can tick the box and say they have autistic representation. It is not the box-ticking which upsets me so much. Organisations knowing it is a good idea to have autistic representation is not necessarily a problem at all. My concern is when autistic people are on those committees and their ideas and wisdom and insight and perspective is ignored. Arrangements where autistic representatives have no say or when they say things are belittled or ignored – That is what I think tokenism is. It is really counterproductive. I think it is probably worse than having no autistic representation that having a token person on committee who is ignored and only has the role for the sake of ticking the box. It really isn’t that hard to include people’s views so it surprises me how often this still happens. If we are in a position of influence on a committee we need to be included and what we have to offer appreciated otherwise it is just a means of an organisation wanting to look better in the community. That is not something I condone and for the autistic people in those situations can cause a lot of stress and inner conflict.

Is there a solution to all at of this? Yes there is and it involves listening and respecting autistic people. Instead of assumptions of incompetence and unhelpful stereotypes, pease see us as equals – friends, colleagues, fellow travellers in the funny old world of ours. Don’t assume – ask and unpack and consider your attitudes if you have an issue in this area. If you approach another human being through a lens of thinking you are somehow more mature and ‘better’ than them you have almost certainly lost that person right away. Instead approach others with an open mind and empty your mind of preconceived notions or success or value or worth or maturity.