Stereotypes are mental slavery

“Some stories enhance life; others degrade it. So we must be careful about the stories we tell, about the way we define ourselves and other people.” (Burton Blatt)

NPR is an American non-profit membership media organization that serves as a national syndicator to a network of hundreds of public radio stations. Three days ago, it decided to publish this image on it’s Facebook page. It gathered thousands of comments, so they contacted the photographer and wrote a follow-up piece about why they decided to publish the image.

We were told that the photographer, Andrew Nixon, shot this image in an effort to show how being caregivers affects the ageing parents.

SBS Insight then posted it to their page, again with many hundreds of comments.

That this is an image of a father who deeply loves his son, I agree.

That this image portrays a reality that remains largely invisible in our society, I agree.

That this image is likely well intentioned, I believe you.

But that, because of these things, it was OK for the photographer to have published this image, I disagree.

I want to try and explain why in the hope of opening up a different perspective. I say different, because the vast majority of online commenters have responded to this image positively.  The vast majority have agreed that this image was fine to publish because it shows love, it shows a reality, and because consent was provided by the parents.

It’s difficult to write about this without seeming to lay judgement on the father (or the family). It’s true I know nothing about either of these people. But neither do most of the people looking and commenting on this image. None of us do. And this is important because imagery like this is so powerful and sends messages about both the young man in this photo as well as people beyond the image.

And so this is the first reason I don’t think this image should have been published. It confirms, not disproves stereotypes.  That’s why I chose the image for this blog, because it links firmly to others arguing similarly – what does it do for the continent of Africa for continued portrayal of people begging, emaciated and desperate?

I believe that any benefit provided by opening up discussion around the issue of carers who are ageing is outweighed by this. In fact, by confirming stereotypes I think this image has served to promote the needs of one party at the expense of another.

Some of the stereotypes about people with disability I think this image re-inforces:

Honourable burden

Forever child-like

Non sexual

Incapable

Paulo Friere wrote in Pedagogy of the Oppressed,  “The oppressor shows solidarity with the oppressed only when he stops regarding the oppressed as an abstract category and sees them as persons who have been unjustly dealt with, deprived of their voice….when he stops making pious, sentimental and individualistic gestures and risks an act of love”.

One of the outcomes of confirming stereotypes is that we limit possibility for people.  People that we don’t even know!

And without knowing anything about this young man, I would argue that we are largely left with a sense of greatly diminished capacity.

But is this reality? When we see people in this way, the possibilities for them have already been limited.

Can this young man learn and grow? Can he communicate? Can he reciprocate? Can he have a positive future? The answer to all these questions, even without knowing him, is yes, because to be human is to have these capacities. Yet when we see images like this, perhaps we wonder that maybe the answer is ‘no’. Imagery like this doesn’t help us move past those in-built hesitations about people with disability. It doesn’t challenge us in a way that brings new understandings about people, that smashes the limits of our preconceptions. We think we are seeing something new. But unfortunately we are actually just seeing more of  the same.

People with disabilities too have something to say about the issues surrounding ageing carers. We need imagery and discussion that illuminates all perspectives on this issue and doesn’t sacrifice one at the expense of another.

When we use images like this, we serve to make distance the continued norm. And by doing that we actually weaken the strategies for inclusion and acceptance. This goes against what a movement of people with disabilities and their allies and families want.  With all our might we want people to be accepted (because rejection is the norm), to be included in their communities (because exclusion is the norm), to be seen for their full self (because most experience is about being seen as the sum total of a ‘label’).

There are great numbers of people who, each day, need any number of very practical tasks done with and for them. They need assistance with lifting, bathing, eating, toileting, transport and mobility, drinking, hygiene, communication etc etc (and all deeply desire for these tasks to be performed with the care that can be seen in this father’s eyes). But these people are also university students, school students, lawyers, government bureaucrats, community development workers, workers of all kinds, worshippers, volunteers, partners, and parents themselves.

When we see images like this, what kind of connection does it establish? Can we imagine ourselves studying with this young man and inviting him for a drink in the cafeteria, or saying yes to offering him a job should someone ask us? Can we imagine our children being friends with him? Can we imagine him as being anything other than cared-for for the rest of his life?

Yes ‘caring’ can regularly be completely shithouse –  tired parents who have cared in this way for years and years and years. Undervalued, un-resourced, taken-for-granted and invisible in our neighbourhoods and our minds. As a sister, I do sometimes (it’s hard to go there) think about the prospect of caring for my brother in his old age (and my old age) and quite probably his final days. What if he outlives me? Yes, I’ve sensed the edge, the unexpressed wish. And one day it will be as real for me as it is for my parents now.

But caring is also a deeply paradoxical and often beautiful experience. I don’t believe you can keep doing the shithouse without the experience – even for the briefest of moments – of the other side. The things you get to see and know deep within your bones about that person because of the deep connection that caring has brought about. The world might not think the person capable of much, but your caring experience tells you otherwise. And because you know this, you keep fighting and you keep caring.

If I hadn’t been helping my brother in the bathroom many years ago, I would never have experienced the first moment I saw him look in the mirror and smile at himself. What a profound moment amongst the banality of caring tasks! The world may think that it is better not to be disabled, but my brother thinks differently. It will power me for the rest of my life.

There have been cherished times with my brother when I have asked ‘who is the carer and who is the cared-for?’ Moments when I have felt terribly down and upset. Now my brother’s disability means he is unlikely to have grasped the complexity of the issue, but he has certainly sensed the emotionality, the feeling coming from me. He has reached out and loved me tenderly in those moments. When I travelled overseas for a long time, apparently he used to go to the top of the stairs at mum’s place and look down to the floor below where my bedroom was, thinking of me in his own way.

When we always portray people as the recipients of care, we again set up an us and them. One can only be the carer and one can only ever be the cared-for.

But I believe relationship and “…attachment arises from the human capacity to move others and be moved by them. Being dependent then no longer means being helpless, powerless and without control: rather, it signifies a conviction that one is able to have an effect on others, as well as the recognition that the interdependence of attachment empowers both the self and the other, not one at the other’s expense.” (Gilligan, 1986)

And this is the point. It is not empowerment if we sacrifice the rights and interests of another party in the process.

Here is an example of an image and an article that portrays things quite differently, while still bringing us into awareness of the issues.

or The Why of InCharge – Part One

This week we have been necessarily reminded, through some great advocates, that there are still institutions for people with disability in NSW. Yep. We’re rolling out the National Disability Insurance Scheme, but for example, there are still over 400 people living in Stockton Centre in the Hunter Valley. Have a look at the others. I know many people who would have the same ‘label’ as people living in these places, and quite probably similar impacts of their impairments. However, just a glance at my Facebook newsfeed this week wonderfully shows people in school, at rock concerts, working, coaching sport, volunteering…. How come we have both possibilities, so diametrically opposed, co-existing still?

Well I know there are lots of reasons and lots of research (fantastically ignored). But these are my thoughts about it.

Firstly that these experiences co-exist shows that it has nothing to do with any supposed objective description of a disability label that implicitly means that some people couldn’t possibly, while others possibly could. “Well he has complex needs” just doesn’t cut it because people with complex needs are, at this minute, also rocking out to Nine Inch Nails.

Today I thought about my younger years fascinated by, and researching in the area of geography.  ‘Disablement’ is partly a spatial process. By this I mean that space and place shape identity. Separation, isolation and segregation are spatial processes. Think about apartheid. Inherently a spatial process. Once people are separate we then establish norms which maintain division – boundaries between ‘us and them’, ‘same and other’, are produced. It means that people are deemed ‘in place’ when they are separate, and deemed out of place when they desire to be part of the everyday, the ordinary, the taken-for-granted that so many non-disabled people (me included) get to experience.

But also places become a lens through which we see people. So a centre like Stockton, itself radically shapes how we see the people in them. We end up thinking “well they must be in that place because they are so disabled and this is therefore the best place for them”. Meanwhile the dude rocking out to Nine Inch Nails is thought somehow to be less disabled.

Let me tell you a little story about how place matters. My older brother has very significant intellectual disability and doesn’t speak. You can look around this website and check out some videos of him. When he moved into his own home about 16 years ago, I was living with him for a bit. His garden started at the side of the house and wound around to the back. One day I was round the back and I could hear an unfamiliar voice in the front. I started wandering around to find a man asking my brother questions – I think he was lost. The guy hadn’t spotted yet that Math couldn’t speak and wasn’t answering! He was having a good old chin wag. It was really an incredible moment for me. I remember just standing and watching for a moment. I know that the place – a home in a street – communicated a role to that man and continued to be more powerful than the impact of a disability on his understanding and perspective.

Another little story. One day 4 of us were squashed up on Math’s couch together – him and me and 2 friends – lined up like cute little Kewpie dolls having fun.  Math’s support worker came through with a tradie and began to introduce us. The tradie was a guy who did all the odd jobs for Math’s disability service provider. He started ‘big waving’ to us and called out a sing-song “hello everyone!” as he slowed his voice down to speak with us. I was looking up at him thinking ‘we’re all lined up on this couch and he thinks we’re the ‘residents!’ I tell you we laughed until we cried after he left.

Space is a medium, a communicator of expectations. In small ways and big big ways.

There’s a history, in my family too, of the wounds of institutionalisation.

When he was 9, Matthew moved into a hostel which I think had about 15 other people with disabilities living there. I remember it as a big old hollow place with lots of dark wooden furniture, panelling and doors, wipe-down furniture that squeaked, heigh ceilings, and big foam shapes lying around. Lots of strange noises (Math’s noises weren’t strange to me. I knew what they meant even at that age). It had a smell to it. Urine, cleaning liquid, washing detergent …. it smelled like institution.

The group homes he lived in subsequently also had that smell sometimes. Do you know that smell? Well I guess I do. And I first smelled it then when I was 7 years old.

From ‘I need help (to keep my family going well)’ to institutional living. What kind of society makes this the solution to the issue being presented? Turns out pretty much every western country and turns out it’s a habit hundreds of years old.

Institutions come big and small. They can be a house with 4 people with disabilities staffed 24 hours a day with ‘carers’. They can be one kid with disability stuck up the back of a classroom learning a separate curriculum glued to an adult ‘support teacher’. Or removed so much for “extra learning” that there is really no point in being there in the first place. They can be our own family desire for creating security, long after we die, by building things to put people in. They can be the leap from “John needs friends” to “Let’s create an Asperger’s social group” rather than “Let’s figure out the kinds of people John might like to meet in his community based on John’s inner-ness”.

We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So Math spent a life from 9 years old to when he was 26 years old, living, recreating and learning with other people with disabilities. Apart from us and people paid to be with him, he knew no other non-disabled people. Because he didn’t speak and because many others couldn’t, he really didn’t form relationships with anybody. He formed relationships with people who could speak – so his paid carers. But they came and went. Form attachment, disappear. This is the stuff that Math learned about relationships and trust. I call him our weekend brother because that’s when we would see him – weekends and some holidays.

Around 20 years ago my family started a group conversation about what was wrong with Matthew’s life. 16 years ago this eventuated in him moving into his own 3 bedroom place with my younger brother and I.

I think we are also plagued by the conjoining of 2 things: low expectations (fabulously, depressingly low) and seeing people only as they are. When someone has been institutionalised they become someone they are not. Or perhaps more that we don’t know, we can’t imagine who else they could be. We can’t see it. We have no experience of someone other than how they present themselves in a place that circumscribes their identity. And also that person has no experience of who they might become.

This was Matthew’s experience and we needed to take a leap of faith. To create something that we had no experience of. To act purely on imagination and vision.

Part 2 – the importance of possibility in change.

Today is International Day of People with Disability.

I tossed around whether to write something for it.

I felt uncomfortable because part of me agrees with the critics – is it a celebration of false community; a smiley-face-party-hat-of-froth overlaying deep inequality? This especially stands out for me when I see the functions created by service providers for their ‘clients’ and know the deep lack of power and decision-making that is likely to characterise their relationship with that provider. Part of me squirms wondering if some of these people might be subject to the kind of violence, bullying and abuse that so easily flows in situations where people are vulnerable and power is concentrated. Take the recent case of the worker at Yooralla service in Victoria.

But today has been the catalyst to some reflections and I decided to share them.

IDPwD has made me reflect on all the people with disabilities I know, love, care about, had the opportunity to work with and am associates of. And I do want to celebrate them. Not as inspiration porn or as some ‘object’ of my learning. Not as some false community. We have congregated and segregated people with disability for centuries and a day like today can indeed serve as a way of yet again, bringing people together (literally or figuratively) in a bubble of non-togetherness. I always remember thinking as a kid that the other people my brother lived with in his group home were more different from each other than the same. Matthew always gravitated to certain people and they generally weren’t those he was deemed by others to have something in common with.

No, when I think of these people I see them in my mind’s-eye making their way in life – with all its concomitant joys and ‘I hate-the-world’ periods. Making their way in life through their own local, political, work-related, family, interest-related, religious and (insert your own title here) communities and sub-cultures.

And when I do that, it gets me excited.

Don’t get me wrong. I see everyone I know struggle, feel so frustrated and experience multiple personal rejection. It regularly flattens me. But I have also had the great privilege through these treasured relationships to see what happens in worlds when people with disability are genuinely present. Those worlds change. So through my relationships I have been able to see a world changed. And that is what I want to celebrate. Thank you one and all.

Institutions come big and small.  They can be a house with 4 people with disabilities staffed 24 hours a day with ‘carers’. They can be one kid with disability stuck up the back of a classroom learning a separate curriculum glued to an adult ‘support teacher’.  They can be our own family desire for creating security, long after we die, by building things to put people in. They can be the leap from “John needs friends” to “Let’s create an Asperger’s social group” rather than “Let’s figure out the kinds of people John might like to meet in his community based on all of John’s inner-ness”.

I know the smell of institutions. I smelled it first when I was 7 years old. I don’t want anyone else to know that smell. All the so-called solutions above smell like that to me. A mixture of urine, wipe-down-plastic-furniture and industrial cleaner. They smell of distance and rejection and exclusion. We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So I find I have more in common with anyone keen on building a truly-inclusive world. For starters they are a far sexier bunch.

I saw this meme on Facebook recently. It reads “We blame society but we are society.”

Interesting. We can’t expect the world to be more welcoming and inclusive if we are not doing the same. We can’t say society doesn’t accept people as they are while we continue to build segregation. Sometimes I am categorised as part of the community of carers, family members, siblings. But I don’t necessarily consider myself totally part of those communities. I know why many parents seem intent on re-building institutions. I FEEL why they do it. But by doing it we re-create the very world we long would change.

Now I don’t want to go all soppy on you, and I know I said something about inspiration porn, but building a truly-inclusive world, that is a real hard place to be. That is where heartache lies because of course there are many a*^holes in the world and because you still can’t even get in the door most of the time. And because pretty much all the resources are still locked-up in congregated and segregated solutions. They are really up against it. So to choose something different is a very vulnerable and often tiresome place to be. And therefore I think it takes extraordinary courage.  Because if it’s the riskier place to be, with possibly much personal cost, then those people I know, love and care about, have to decided to be in that place anyway.

And I want to thank every one of you on this day.

I recently spoke at a conference called “Managing the Complexities of Self Directed Supports” (more on those ‘complexities’ in my next article).

The audience was largely service providers and so I was super-keen to get them thinking about the potential of their influence in supporting people with self-direction.

One of the strongest messages from my family’s experiences is to encourage service providers and professionals to SEE BEYOND and ASK NEW QUESTIONS in order that increasing numbers can grasp the opportunity of self direction.

Our self-directed journey began about 20 years ago with what I see in hindsight now was the beginning of a family conversation about what was wrong in my brother’s life and situation. From what was wrong, with the help of others, we worked out what could be right. NOTE – THAT’S ‘WITH THE HELP OF OTHERS’.

My brother moved from our family home into a large hostel when he was 9 years old. He lived in this hostel and then group homes until he was 26 when he moved into his own home.

His life now is very different. Not just his life but actually his identity, how he sees himself and how we and the world see him. Through changing his circumstances and through being able to work on the areas of his life that we deemed most important to his well-being, we have quite successfully enabled him. We have not done it alone.

When Matthew was living away from us, we might only see him on weekends and some holidays. His weekly life was not something I really knew much about nor had any real involvement in. As a teenager and into my early adulthood I remember starting to form some opinions about this. I remember yearly processes of being asked questions about Matthew but they always seemed to be the same questions and rarely do I remember us being asked to create this process or contribute to it. Sometimes people would come who knew nothing about Matthew and we would spend most of the meeting saying how we didn’t think their ideas would work.  Sometimes we didn’t participate I think because we couldn’t really see anything changing from year to year.  I remember thinking I’d just love him as much as I could when I saw him and hopefully that would be enough to last him.

It’s true that my mother was and is a leader in the advocacy movement. But isn’t that interesting? It can be quite a different story to take a leap forward into the unknown of your own life (even when the known is completely unsatisfactory and perhaps even abusive). It is also really hard to know what to do differently and HOW to do it.

So I think SEEING CANNOT BE BELIEVING. The contexts that we see people in can drive our perceptions of what they are capable of achieving. This was both the case for Matthew and for us. I know now that you could have thought us a number of things: an uninterested family, or a distant family, a family who didn’t have the goods, and therefore a family who might be incapable of  figuring out what was needed and then creating the means to achieve that.

It turns out we are and were none of those things.

The skills needed are

1. SEEING BEYOND PEOPLE’S CURRENT CIRCUMSTANCES

2. BELIEVING IN BETTER (even if they are struggling with this)

3. ASKING NEW QUESTIONS.

Connection with others is part of why we’re here. To love, to be loved in return and to belong.

But the risk here is heartbreak, let-down and rejection.  So strong, caring relationships and belonging keep people safe but they are also a key experience of vulnerability. Many people decide that this is too big a risk to take on behalf of themselves or their family member. How might we find a way forward here?

In my experiences around my brother and with other families and individuals in building relationships within community, I find a common struggle. It is not with the intellectual understanding as to why relationships are important. It is with emotional step to start, to try, to reach out to others, to ask.

So I’m going to talk about the things that get in the way that I think are within us. It is comfortable to think that devaluation is something that the ‘system’ and others create. It means that others are the ones that need to change.

In recent years a personal shift I have taken is to value and focus on my inner self more. If something out there needs to change, what am I doing in myself about it? In my 20s I thought this was a luxurious navel gazing experience for middle class wankers. The world was going to buggery and there simply wasn’t time for this. Action was what was needed. Now I see that, whatever our position – whether we are thinking about ourselves and our own relationships, or whether we are thinking on behalf of another – we can all reflect on our place and our power in our own or another’s life.

What are safeguards?

We might typically think of them as measures which offer protection against vulnerability arising from devaluation.

A small example: several years ago in checking Matthew’s budget book we discovered a discrepancy between the amount Matthew withdrew at the bank and the amount that would be entered into his ledger. For example, his bank statement would say he took out $160. His ledger would note $120. Small amounts – usually 20, 30 dollars would be missing. And always the same signature of the staff member when this happened. Theft by a known and trusted person in Matthew’s team.

We realised we had little knowledge of Math’s weekly monetary matters. The safeguard we created was that from now on a family member would check Math’s budget each week, create a new budget, write it in his ledger and draw up the withdrawal slip with the amount on it. We’ve never had a problem since. But have we had other potentially negative impacts?

Wounding experiences

This leads into thinking about wounding experiences. Matthew has faced many wounding experiences from people whom he and we trusted, or that the service system supported and trusted. Some of them are still too painful to mention. What happens when trust is broken? What happens when you feel people have let you down? Matthew’s disability is such that he just does not comprehend these experiences intellectually and this makes it all the more painful because his experience is being in close relationship with someone one day and then never seeing them again. He can’t speak so how does his voice get articulated in these experiences? Often it simply doesn’t.

The question I have been asking recently (and no clear answers yet): as a family governed system of support, have we created safeguards from these experiences that come from a wounded place, a place that often finds it hard to trust, a place where we are trying to make up for all that lost time when Math was away from us, a place of feeling let down and hurt by others?

If this is the case, and in a ‘representative system’ (that is where family and others largely represent Matthew’s interests), are we inadvertently adding to vulnerability when we take action from these places? It is only human to find it hard to bounce back from the breaking of trust, from experiences of rejection: to move on and treat the next experience as totally new, without the ‘baggage’ of the past. No-one can be blamed or judgement made about any of these very human reactions and experiences. But in a representative system, because you are acting on another’s behalf, it is always healthy to ask questions and to reflect. A case in point with the example that I have used above. With only family now with authority around Math’s weekly finances, what impact dos this have for others in his system? I have found that we have locked ourselves into a solution that doesn’t give us much freedom. Who do we ask if family members don’t want this role anymore or want to go away or are somehow unavailable. Do we trust anyone else?

My hypothesis

I still firmly believe that relationships, connection to others and inclusion are the strongest safeguards against wounding and devaluation. What ultimately keeps people safe is other people and there are lots of powerful and life-giving examples of this in Matthew’s life. For starters the difference in his life since he came back to us and reclaimed his place in our family. Connection is why we’re here. I believe it is part of our human identity – to love, to be loved in return, to belong. Our identities are relational. I am me because of my relationships to others.

So here we have the block – believing in the power of relationships but having experienced multiple wounds from relationships.

Fully embracing vulnerability

The bind is that relationships, inclusion, belonging keep us safe, but they are also a key experience of vulnerability. In order for connection to happen we have to allow ourselves to be vulnerable.

What if we tried to see vulnerability a bit differently; as a human experience?

I would encourage you to take a look at the work of Brene Brown.

Listening to her research into these areas of connection, vulnerability, shame and authenticity changed my whole perspective and was catalyst to me delving into these questions. Check out the fantastic presentation she did for TED Talks a couple years ago.

The risks when we reach out are being misunderstood, being rejected, feeling out of control, feeling exposed, fearing being seen as needy, all our crappy characteristics will become known and then we we’ll be left, being in a place where there are no guarantees …… this list goes on.

As a family member, I think we often take on these fears on behalf of our person with disability. They have faced so many wounding experiences already that we don’t want them to have to face anymore if we can help it. Actually we become afraid to take a risk on another’s behalf.  All the previous wounding experiences pile up and this history makes it hard to take any more risks. Do we then become part of the wounding structures ourselves because we can’t bring ourselves to do this, because we perceive too much risk in reaching out? Because this kind of vulnerability is also the birthplace of joy, creativity, love and tenderness.

Brown’s research reveals consistently that the one thing that keeps us out of connection with others is fear of not being worthy of it. People who felt they were worthy, fully embraced vulnerability. To them it wasn’t pretty but it was necessary. If I haven’t tempted you to her website, I hope I have now!

This then got me thinking about shame. Do we carry shame about ourselves or shame on another’s behalf? Do we believe that we or the people we represent, are imperfect but worthy of love and belonging? If we don’t believe that people can connect to others in their vulnerable and imperfect state, or that there are some people worthier of love and belonging than others, then we won’t be able to take the steps of reaching out to others, of developing relationships beyond those paid to be there.

Brown’s research over many years has revealed that the only difference between people who have a strong sense of belonging and worthiness and people who wonder if they are good enough is that they believe they are worthy of love and belonging.

We need the courage to be imperfect, compassion to be kind to ourselves and celebrate who we are.