Jo had to go back in time to a time and an activity that she remembered gave Emma joy. She experimented and bought a shredder. Emma now has a business – Master Shredder - with 4 business clients including a credit union and solictors’ offices. She can now see a reason to communicate and is wanting to go out on her own and with friends.

Here is the link if you’re looking for more information on where and when.

I am interested in people getting the most out of the NDIS. And for me this means transformation. It means moving from the margins. It means having a life where you are more than just a client or an object of other people’s purpose. I don’t believe that transformation ever lands solely from ‘on high’ or from the ‘top down’.

In my experience those that are smashing our perennial low expectations, who are citizens in the broadest sense of that term, those who can see that their own life means something, all of them have seized moments when the system has popped out with something that can be shaped. Transformation starts with an intent – I no longer desire to accept that what is offered is all that is possible. No planner, no system can make this happen. This is an inner spark for more.

We are undoubtedly meeting a flawed process with the NDIS. I look on forums regularly where the many flaws appear. We’re told there’s a chance now, but many of us wonder ‘is there really’? Much of our life experience tells us that most things that get announced as big and shiny and wonderful never turn out to be that way.

In my personal and working life I’ve seen the terrible – segregation, exclusion, low expectations, congregation. I’ve also seen the flip side. I’ve seen what it looks like when people are experiencing and striving for their deep yearnings – to be someone, to belong, to love and be loved, to contribute, to feel their own life speaks and means something. I’ve learned a thing or two about the journey from one to the other.

These are some of the elements that I think are core to this change. It’s more than a package of support. Yes, having dollars are essential to exercising and maintaining genuine authority in your life. Being in charge of those dollars too. But it’s more than the money. I’m sure I’m not the only one who has seen extraordinary resources spent on things which do not really improve life opportunities for people. Instead they continue to waste people’s lives.

________________________

“If I look at you like an impoverished person and you see yourself as the same, then no amount of money will make change”

________________________

This is the practical work of InCharge and so my vision of being a contributor to those wanting to grasp an opportunity for change. To work with people on their desires for themselves and their lives. And then help put the pieces in place around that – including supports, dollars, staff, services – that will help bring those things to life. We build from the ground-up with people.

Many people can’t speak these desires. That doesn’t matter. There are many ways this can happen. It may only be a niggling – surely there is more to life than seems to be on offer! Or an expression of continued dislike and complaint. A long list of things that aren’t right (this is how my family got started on change). Or non-verbal expressions of profound unhappiness and lack of control. People who are crying out for change.

We must also demand differently from our systems and services. This is a ‘top down’ piece to be done by our governments and by the NDIA. There is a lot of work to be done to move away from ‘special’ programs and solutions that further serve to segregate and exclude people. I was very heartened to hear Rhonda Galbally speak at a conference in Sydney recently where she described work that the NDIA Independent Advisory Council had been doing on ‘reasonable and necessary’ supports. The starting point for that she said, is the question “What is an ordinary life?” This is where we should be moving with reasonable and necessary. The NDIS should be funding the gap between the answer to that question and where a person finds themselves. This would help stop the NDIS from thinking more of the same is OK, she said. Hopefully the proof will be in the ILC and planning process pudding. How does this come to play out in the planning process regardless of the planner sitting before you?

But life is more than a planning conversation. It is also about how we choose to use those resources. What we direct them towards. Are we asking for different as well?

These are some of the qualities I think are characteristic of genuinely innovative service responses.

Focussing on sustainability

Long lasting, personal relationships are the key to ongoing quality of life. Creating a more inclusive society by assisting people to tap into the wealth of ideas, people, energy and financial resources within their own networks, or to build these where they don’t exist.

Promoting active citizenry

People are not just receivers. Showcase and build on people’s innate capacities and interests, in order to realise potential.

Addressing adaptive barriers to change

When we are seeking to be the author of our own life, many things have the potential to de-rail us. For many people for example, the fear of being rejected when you take a step forward in your community can be a huge thing, but making lasting change depends upon stepping forward.

Aspire to be ‘alongside’ (not doing for) people in their own efforts at change.

Developing rich relationships

Dissatisfaction with the dominance of paid relationships, and so breaking this dominance and offering people a vision of a life lived with many different kinds of people and relationships.

Welcoming environments

Working with the richness that already exists in our communities to assist it become more adept? at inclusion. Enduring relationships do not come from services, they come from the building blocks of the neighbourhood. That means investing in communities to become more competent. It means supporting an individual by growing community with them so that a service is not the bringers of the answers, but the bringers of the questions.

Autonomy and control

Focus on the conditions in which autonomy and greater control by people themselves can thrive.

This is more than just ‘goals’. People need to be ignited by something to strive for in their life. But they also need supportive, encouraging and challenging people around them. They need valued roles and services that are personalised and directed by people themselves.

I look forward to building and seeking these responses.

Libby

Photo of Margaret Ward

Margaret Ward has a lot of practical, heartfelt and straight-talking wisdom to share.

Originally a practicing architect in housing, she became a parent of a person with disability and as a consequence, has had a varied career as a policy writer, service provider and advocate in the areas of social inclusion, housing and disability.

She was a founding family member of Homes West Association which has supported user-direction for over twenty years. She is currently Research Fellow at the School of Human Services and Social Work, Griffith University in Brisbane, Australia. She is currently convenor of the Australian Network for Universal Housing Design.

Dr Ward received the Public Service Medal for her work on housing for people with disability within the Queensland Government.

So much has been written and documented about the nature of home. Home is where it all starts and where it all ends. It is where we rest and renew. It is essential for our wellbeing and should be a place where we feel rock-solid safe. Home is as various as the people we know. And so it should be for people with disability. Everyone needs a home. This has made up a great part of my life and work for the last 30 years. My daughter, Mena, was able to live, love and die in her own home. But this was not something that the system made easy for her. This was why vision was so important – we just knew what was needed and we weren’t deterred.

When I was asked to be a guest speaker on this webinar, my initial response was “Well, it is grim and I’ll need to say this.” But I agreed because I also feel there are things that could be done. It’s not right, yes. It doesn’t replace systemic change. But, for those of us looking for some things we might be able to do, to keep us sustained and hopeful, I wanted to contribute some of my experience.

The NDIS offers you greater choice and control over where, how and with whom you live. But what can you do to find a home of your own?

Where to start

The first place to start is to see how other people find a place and make it their home. Despite the barriers, it is still important to name YOUR home to the detail. What will YOUR home look like and be? I’ve seen the difference this can make, in taking advantage of an opportunity that becomes available. I’ve seen families who have done this visioning work well, able to then mould and safeguard opportunities. Others who didn’t have ended up, years later, feeling stuck in vacancy-managed group living unable to undo the threads for a more individualised arrangement.

Next, is perhaps a mindset that is helpful. To get started with something bearing in mind that your first place is not likely to be your last—people change their housing as their needs and priorities change. However, better choices are made when you have a vision and a plan. Actually we need to be planning as early as possible now.

You can try different ways of living to think about what support you might need, who might be a good house-mate and what sort of place suits you.

Why not think about house-sitting for a friend, go on a holiday without the family, rent a serviced apartment for a few weeks.

The NDIS

The NDIS is another opportunity to help get you closer. Let’s talk about what might be possible to do with resources through the scheme.

Five ideas to action right now

I argue that the National Disability Insurance Agency could take five practical steps to address the housing needs of most people with disability.

1. It could advocate for a sustainable social housing system
2. It could support the re-establishment of the National Rental Affordability Scheme and its commitment to equitable physical and financial access in future funding rounds
3. It could expand home purchase assistance, especially shared-equity opportunities
4. The NDIA has the opportunity to assure timely access and quality of home modification service 
5. The NDIA can influence the supply of accessible housing by calling for regulation of minimum access features in mainstream housing in the National Construction Code

On this webinar I will explore these and other ideas to help you decide where, how and with whom you want to live. It will then consider the various housing options that are currently available and what are some of the pitfalls.

Everyone deserves to have a place they can call home—you can too.

Join Margaret for our webinar on 18th August 2015.

Click here to register!

L-R Libby’s husband, Libby and Matthew

I find myself often being asked by parents and those who work in the disability sector about being a ‘sibling’. Have there been difficulties growing up? How do I get my kids involved? I don’t want my other kids to be involved because they have their own lives. What strategies can I use in my work to help parents think about their other kids? How do I even get to talk to siblings as we are always talking to parents?

Here are some of my thoughts about the whole area.

Some themes

Brothers and sisters are likely to have the longest relationship with a person with disability. Usually continuing after parents have died, they can last for 70 years or more.

I have run workshops and also observe the roles of siblings in many of the families I work with.

I’ve heard some interesting comments made and stories shared. All with some common themes it seems:

1. A desire by brothers and sisters to be involved but feeling ill-prepared and uncertain about this
2. Families are so crucial to our well-being but they are a mish-mash of power dynamics
3. All sibling relationships are ambiguous. Basically you love and hate your family at the same time but, strangely, this does not diminish love.
4. There exists a deep emotional paradox with many parents. They both want their other children to be there in the future but they also want them to lead their own lives. Even when unspoken, it remains an energy in families and is often hard to talk about
5. Many siblings appear to watching, thinking and planning in their own heads, regardless of whether it gets talked about. They sometimes have very complex and finely tuned plans worked out about where they will live, what will happen for their sibling etc.

The Orders of Love

The Orders of Love is a theory by a guy called Bert Hellinger (Get you Google fingers going) that I have found very helpful in thinking through some of these dynamics.

There is a natural order to a family that is unchangeable (even through events like divorce or death). Parents are first in line. Then there is the first born sibling, the second born and so on. Imagine it like a line of paper cut-out-dolls.

Image of paper cut-out people

When siblings marry or have a long term partner, they then create their own family, their own ‘paper-cut-out’. Their primary relationship moves to their partner and then often their own children.

However, I think a social dynamic impacts many families in which there is a child with disability that can disrupt this. This dynamic is best represented by those relationship circles that Judith Snow so beautifully captured many years ago. Below is a (sort of and generalised) depiction of the layers of relationship most of us have in our lives.

Circles of relationship

But what is a common relationship experience for many people with disability?

This can often contrast hugely to other brothers and sisters whose lives and relationships expand as they grow up and they develop their own intimacy circle separate from their parents. This is actually the typical experience.

So one of the keys to strong siblings relationships is that each sibling gets to have their own wonderful web of relationship circles that are their very own. There isn’t pressure or a feeling that siblings have to become the primary relationship for the person after the parent and as they get older. Imagine those paper dolls look like this – where each person in the family gets their own life. You can see that people aren’t then dependent upon each other for relationship, but rather get to contribute to each other.

Three different circles of relationships

This implies a responsibility by all involved in the life of a person with disability to be working towards building a rich life with lots of different layers of relationships. A life like this mirrors what happens for people without disability.

Other things that are important to consider

Providing siblings with the opportunity to develop understanding of ‘the system’.

Remember, parents have gathered this information over the lifetime of their child (even if they think the system is unsupportive) but it is actually something that needs to be learned especially foundational information like

1. positive stories of inclusion
2. learning what valued roles are and developing a vision for their sibling
3. developing their own vision and having a chance to dream for themselves
4. talking about and mapping our family relationships

A sibling cannot be a parent!

Be wary about looking to ask for involvement based on a parental role. Even when a parent dies, the sibling relationship will stay that way. This doesn’t mean that brothers and sisters won’t play a key advocacy or safeguarding role in the future. But it is healthiest if it comes from their sibling relationship.
It might not get talked about, but caring siblings will be thinking about these things regardless.

Brooching these topics can take us to very raw, very vulnerable places. But it can be crucial for everyone’s peace of mind into the future.

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.

Brightly coloured flowers

Lucy and her family have been very thoughtful in creating a role at her local florist. In this article we share the very practical steps they took.

Download the word version of Engineering the ordinary

Download the PDF version of Engineering the ordinary

“If I look at you like an impoverished person and you see yourself as a victim, no amount of money will change this.”

Below is an excerpt of a speech I delivered for The School for Social Entrepreneurs titled “Social Enterprise and its potential for creating more inclusive and sustainable communities” – February 20th, 2014.

“I’m very excited this evening to tell you a bit about the enterprise I founded, InCharge, and also to share my thoughts on the connections between social enterprise, genuine innovation and the creation of an inclusive society.

When I was 7 years old, my older brother, Matthew, left our family home, to be cared for elsewhere. Far from aiding our family as it was promised to be, it skewed it, and sent my brother on the path of a different and separate life to us. He spent his childhood languishing and abused in a large hostel and then in group homes. I remember arriving at his 18th birthday celebration to find that the only people there were his immediate family, and the paid staff of his group home. I remember my father cried. It was a wake-up call for me.

Imagine if your only relationships were with people paid to be there? This is the life experience of a client, not a contributor. So something had to change.

Matthew has now lived in his own home for 16 years and shared it consistently with people without disability. He has his own small business built on his interests and capacities. He has frequent gatherings of friends, supporters and family.

The difference is extraordinary. Yet Matthew is only one of 400,000 people with significant disabilities in Australia. So actually and unfortunately his deprivation is not unusual.

InCharge was created to change the experiences of others who struggle to experience a life of contribution and rich relationships. Our vision is a society where everyone’s potential is realised and where we thrive among people who love and care about us.

We exist to assist people with disability be the authors of their own lives. When people are truly in charge they are ignited by possibility in their own lives, and they also have the resources, tools and mindset to go get it. This is a self-directed life. Through our products, services and partnerships we seek to ignite possibility and then assist people put the pieces in place that turn possibility into reality.

Why is this important?

Let’s go back to that moment when my parents stepped forward and asked for assistance. What did they encounter? Well they encountered a human service system. It is now an industry, and it is essentially predicated on the belief that ‘special’ people need specialist solutions delivered by experts in specially built places. Separate schools, classrooms, homes, workplaces and centres to train people and provide therapy and other interventions. Mostly we encounter people as they drive past us in white buses or as they move in groups through our shopping centres. We see them in the distance of our lives. In our desire to assist people get a better deal we have actually created the tools of exclusion.

Such a system cannot deliver the stuff of a good life. It cannot deliver love, it cannot deliver intimacy, it cannot deliver belonging or purpose, friendship, or being an actor in one’s own life.

Ultimately this is what we want for ourselves; a life of contribution, a life of richness.

If we are to bring such an inclusive community to life then we need to look now in different places for solutions. This is all of our business – to look for the real leaders and the genuine solutions.

We are fortunate in Australia that there are now many more opportunities for people to step beyond a life lived in ‘service land’. There are so many more people now who have ideas about their good life, who are trying things and who have different expectations. Who are basically sticking their fingers up at the persistent and draining low expectations that pervades our society.

So we believe that one of the most powerful things that can happen is to shine a light, support and nurture ideas people are generating themselves. These are the places it make sense to look for the kinds of solutions that really create an inclusive society. And this is also where support to social enterprise could be of such benefit.

As the founder of InCharge I have chosen a social enterprise framework because it has allowed the freedom to find the best ways to shine a light and support genuine innovation. It has been so beneficial to explore the kind of petri dish that bubbles and ignites this stuff. Remaining loose but focussed, allows us to explore the spaces between, where exciting things might burst forth. I believe the 4 way partnership that has supported Nathan – who will speak to you in a moment – to become an SSE student is a fine example of this. Social enterprise has really helped us to think about our sustainability. The idea that we can create our own resources and scale when we need to. Focussing on the internal assets and capacities of the organisation as a starting place to generate value, including financial value, has been revolutionary to me coming from a traditional non-profit background.

So you are going to hear from Nathan Basha tonight.

But what other interesting innovations are we finding?

People with significant disabilities are finding ways for themselves to work. Micro-enterprise and small niche businesses are becoming a very attractive idea for many people assessed out of employment support, and otherwise find themselves relegated to a drab life of endless activities, community access and training.

People are finding very interesting ways of being supported to move into their own homes, thus breaking the nexus of the non-choice between being their parents home forever or living with other people with disabilities. They are living with people without disabilities, they are creating intentional communities of disabled and non disabled people.

People with intellectual disability and their advocates are creating pathways into university

1. see University of Sydney
2. and the formative program in Alberta, Canada

They are building their own enterprises built to address very specific barriers – please look on our links page for some fabulous examples.

So what are the threads that bind these kinds of ideas, projects and movements?

I want share with you what I think are some of the hallmarks of genuine innovation. Again I hope you see the universality in these for all of us working to create more inclusive societies.

Sustainability

Long lasting, personal relationships are the key to ongoing quality of life. Innovative enterprises create a more inclusive society by assisting people to tap into the wealth of ideas, people, energy and financial resources within their own networks, or to build these where they don’t exist.

 Active citizenry

People are not just receivers. Innovative enterprises showcase and build on people’s innate capacities and interests, in order to realise potential.

Addressing adaptive barriers to change

When we are seeking to be the author of our own life, many things have the potential to de-rail us. What are the barriers to change that confront those in the communities you work in?

For people with disability for example, the fear of being rejected when you take a step forward in your community can be a huge thing, but making lasting change depends upon stepping forward.? Innovative enterprises aspire to be with and for people in their own efforts at change.

Developing rich relationships

Unsatisfied with the dominance of paid relationships, innovative enterprises break this dominance and offer people a vision of a life lived with many different kinds of people and relationships.

Welcoming environments

Innovative enterprises work with the richness that already exists in our community to assist it become more adept? at inclusion. We don’t need to keep building separate.

Autonomy and control

Innovative enterprises focus on the conditions in which autonomy and greater control by people themselves can thrive.

I think we need to invest in the leaders, projects or enterprises which are attempting to show value in very non traditional areas and seeking the kinds of impacts that go to the heart of an inclusive society then we are on to something very exciting indeed.

Thank you for your time.”

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.