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.

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.