What Makes for a Good Life?

I met Barbara at a conference about advocacy a couple of weeks ago. Barbara volunteers to be an advocate for a young woman with learning disabilities - she does this because she is unsettled, she knows that all is not well in this young woman's life, she feels compelled to be there.

Barbara very kindly sent me a book and a letter following our meeting - I commend it to you because it is thought provoking and layered. 'People with Intellectual Disabilities; Towards a Good Life' by Kelly Johnson, Jan Walmsley and Marie Wolfe.

Martin Seligman, a leading light in positive psychology who wrote Authentic Happiness ends his book by reflecting on three kinds of life - the pleasurable life, the good life and the meaningful life and wonders if happiness at a deeper level is derived from a life imbued with meaning - some of the features being around awareness, contribution, compassion, and self development.

I am noticing that the models and schemas that have been deployed, largely by non disabled people to transform the lives of those who live with learning disabilities may serve more to re-inforce the separation than to create something new and good, something than means each unique life is respected.

In the UK we are urged to 'Value People Now'.

Barbara is doing this as she seeks to know what a good life is for one woman who lives nearby. Barbara has assets, she is articulate, curious and energetic. She is adding meaning to her own life by asking questions about the life of this young woman.

Perhaps this is the only way to really know that you are valued - when people want to be with you, to know and understand you, to figure out what a good life looks, sounds and feels like for you. Some of us are blessed by this kind of life - reciprocity and exchange. Many are not.

Thankyou to Barbara for her kindness and refusal to accept a life in which people who share the place she lives are expected to settle for something less than a good life.

Andy

Farewell to the Man of Peace

Today, I was very thankful to share the celebration of the life of a man I knew who died last week. His family spoke lovingly of the way in which their own character had been shaped by this man - patience, stillness, a powerful ability to be fully in each moment, awe and wonder of nature and the elements - no grasping or need to acquire things. Dad summed it up when he said that Andy taught him to just be.
What better lesson?
With heart,
Andy

Free School

Today i learnt something that will change the way i teach forever. I learnt to trust my instincts and to allow space for the group i was working with to be both the teachers and the learners.

Jackie and i created the space,the energy and a sense of adventure. The people who had never taught created something new and beautiful and they shared their wisdom and their gifts. The people of Gettalife embodied togetherness and they listened and appreciated each other and we danced to round off the day. Oliver and Christine swayed and rocked to Lean on Me and we followed their every move.

One teacher is never enough.

To learn to be together we must all be seen as both teacher and student.

andy

Knowing You Matter

Will all older people who are in care environments know that they matter?

We have made a film which places compassion, kindness and respect at the heart of care. Older people spoke bravely and honestly on the film about what they feel, and think and about their stories. The response to the film has included:-

A young woman said she would spend more time with her Granny and would tell her how much she admired her
A 79 year old woman wanted to know how she could volunteer
A University researcher organised her own screening
A national campaigning organisation want to help to make the film core to the worker induction in every care home

Universal human needs are simply expressed in the film. I hope that the impact is felt by people and their families. I hope that people can end their days with a feeling of peace, knowing they matter.

Andy

The Togetherness Walk and Roll

i am imagining quiet power in the intention to walk together...a warm welcome, a walk and roll in silence, a celebration of each other.
tea and cake and emerging connection to ourselves and each other.
Simplicity.
Community.
Belonging.
Hope.
Love.
Kindness.
Solidarity.
Compassion

all can be expressed through silence.

There has been too much noise.

I long for a gentle togetherness - a kind of quiet magic in our shared being.

Andy

So the money has run out, now what?

A meeting on friday afternoon - I am told that the organisation I lead is percieved as excellent at bringing people together to imagine a better future for themeselves and for each other...that our work is viewed as radical and inspiring..i am relaxing in the sunshine as I hear this..then comes the sucker punch...but dont expect any work beacuse their isnt any money, the commissioner I am sitting with who I have deep respect for has been told to cut the budget by 20% - and he senses that is just the start. We have overconsumed and grown fat with our bloated lives, filled with stuff we dont need, lacking many of things we do - we dont know who we are, many of us are afraid and isolated....even within our own families.

My question is this - will this mean a retreat furthur into serviceland with all of the limiting beliefs and separatist furniture that is located there, or will there be an expansion of our hearts and our thinking and a letting go of power so that people will show their care for each other by meeting the needs of their own diverse communities through kindness, generosity and reciprocity?

in this moment it seems to me that it is foolish to think that power will be relinquished, and that the only way for power to move is for us (citizens who care enough to act) to claim it.

On friday myself and allies sat in Regents Park and we wondered what this power shift will take - we must place our energy on what we can change....how would it be to place value not on competition or on what we have but instead on what we give, the invites that we issue and the ways in which we express our solidarity with each other. We are designing the Togetherness Walk to place explicit value on these things - by choosing to walk together we express our belief in each other and in ourselves.

I need to know that I matter and I believe that, at a deep level I know only because I give and allow others to give to me. My true wealth is measured not in terms of money or things, but can be only be really known through the love that I feel, the caring I show and and the people who care about my life as it unfolds.

It is time for an explosion of giving - we have suppressed our need to give for too long.

Andy

Wholeness

I am noticing that there is a thread that runs through brilliant support - it seems to be about wholeness. When things are good in the lives of people they are seen and felt as whole, not broken and in need of fixing. This way of seeing and being creates a kind of magic because when you know that others see you as whole just by being the way you are, you can grow from the inside out...you are affirmed because there are people in your life who stand alongside without any force or disquiet.

As Dan Gottlieb says:-

"Advice not sought is never respectful"

I am aware that for people with learning disabilites life is often a daily diet of unsought advice and fixing. How about the people in a person's life, whether paid or not, begin by simply offering their non judgemental presence, simply delight in knowing them, not trying to make them be any more or less than they already are?

We all want this acceptance, it gives us our own power and means we lead our days and our lives. Thankyou to the committed people of Grapevine and Get a Life, both in Coventry, and to Andy and Pat from Diversity Matters, for helping me to think in this way....it has made my mind quieter and my heart more open...and thankyou to Jackie for being this quietness, it is deeply liberating.

Andy spoke of Alex, a boy who needs very attentive health care to stay alive. Andy thought his role as advocate for Alex would involve this health care, asking questions and prompting better ways....but Alex has taught Andy to just be there...it is this simple presence without seeking anything new which allows wholeness to be felt by both Andy and Alex - this subtle magic when Andy shows Alex he is perfect and is just beside him....this is where joy and freedom are to be found. When Andy spoke of Alex there was a sense of reverie and awe - this can only be found in the quietness of being together.

The Grapevine people sat quietly listening to each other without interuption - we were seeking to create a level of listening we were calling profound - no interuptions, a quiet mind and an open heart....feelings are welcomed, thoughts are set free...the sense that what comes is all that is required in that moment - no fixing, no feedback, no judgement....more reverie.

So many people see themeselves as broken - to show them they are not is a precious gift.

Andy

GIVE

Dear friends and allies

The message in this blog is simple - give.

Your time, your heart, your best, your resources, your appreciation, your gifts, your hopes, your joy, your pain, your truth.

Give - because giving transforms.

The world needs us all to give - we have lived through an era of take, and we urgently need to reconnect with what is deep inside us - be of service to each other by giving.

...and one last thing, every single human being on the planet has things to give.

Andy

The Quiet Voice by Judith Snow

I have nothing to add - except to say thankyou Judith for your courage and your quiet voice.

with deep respect

Andy

The Quiet Voice
by Judith Snow
Please distribute widely. With love and thanks; Judith

Judith A. Snow, M.A.
108 Hallam St.
Toronto, Ontario, Canada
M6H 1W8
Phone: 416-538-9344 416-538-9344 Fax: 416-516-1691 e-Mail: judiths@ica.net

I am writing this message and sending it everywhere in order to reach as many people as possible who have been labeled disabled. There is an important day happening at the TASH conference in Anaheim on Saturday, November 17. The meeting that day is called Leading With a Quiet Voice. This will be a day for us to think and explore together what it means for us -- as people who are called disabled -- to be leaders in our own lives, in our communities and as advocates.

It is very important for as many people who are labeled disabled as possible to come on Saturday, November 17, from 10 AM - 4 PM. It is important because we have many things to share with each other and we have many questions to explore. Of course it is also important for people who have not been labeled disabled to come. But I am sure that lots of people who are labeled normal will come. Unfortunately, such people often go to important meetings without us. This time we must be there too because the purpose of the meeting is for us to find our own questions and answers.

My name is Judith Snow. I am a person who can barely use my body at all. Every day I live and work through the assistance of several personal attendants.

I am 52 years old. All my life I have been around people who don’t speak. I have often felt that I am a lot like people who don’t speak, except that I do speak. My body is similar. I do things with the support of other people -- like most people who don’t speak. I have been interested all my life in the way that people who don’t speak live and communicate: I notice how so many other people treat people who don’t speak as if they aren’t really people.

Last year Rob Cutler asked me a question. Rob has autism and he mainly talks by using facilitated communication with Mark, his supporter. Rob is also the President of the Autism National Committee. He asked me: “How can we close BRI?” [Sentence deleted for legal reasons.]

Rob’s question raised many difficult questions for me. I have not stopped thinking about Rob’s question.

The real problem -- the really important question I think -- is: “How can people listen to us?”

Advocates invent many strategies. Every strategy is meant to get someone more powerful to listen, agree and change how they act. People get together in groups. They raise money and hire people to make important points with politicians. They research facts and write papers. They block buses and roads. They create meetings and interrupt other meetings. They make phone calls and sometimes make enough phone calls to block the phone system. They hand out pamphlets explaining their ideas and experience. They make web sites and connect with other people’s web sites. They light candles and hold hands. They sing and chant.

When people want people who are labeled disabled to be leaders they try to get us to do all these things. Rob was asking me how people with autism could do these things and succeed in closing hateful places where people are being tortured.

Not one of these strategies to make change was invented by someone who doesn’t speak. All those strategies are difficult, and usually impossible, for a person who doesn’t speak. They are also difficult, and usually impossible, for someone like myself who goes through life with the hands-on support of other people.

Why?
- It is difficult for us just to get together. You have to meet with people regularly and often enough to carry out sustained action. Often we don’t have the transportation, attendants, energy, etc.
- We are usually dirt poor.
- We are often living in places where our activities are controlled.
- Writing and speaking often are not our best way of communicating.
- Nearly all of us have been physically and emotionally abused, even tortured. Many of us live lives where we are hurt every day.
- We are taught to not trust and not love ourselves.
- People who love us and support us want us to be safe and don’t want us to challenge powerful people who can hurt us.
- People think that it is too bad we are the way we are. They don’t listen to us because they think the “normal” ways of living are better.

Sometimes people who are called disabled break through and, like ADAPT or SABE, are successful at making change. But even these successes are limited when it comes to people who don’t speak. Other advocates often don’t include people who are not articulate.

For me there are other questions that are rarely asked and they are very, very important questions. I ask these questions because I think I am a leader and Rob Cutler is a leader, and many of us are and can be leaders. I think we need to find our OWN ways to lead so that we will be respected and successful. We need to find our OWN ways to get people to listen.

My questions are.
Why are we called “dis-abled”?

We have different and unique characteristics. Often we are silent, or nearly so. Our bodies are unusually shaped. We are often fragile and frail.

We live in intimate connection with other people’s bodies, minds and hearts. Our ways are not inferior to others’ ways.

Living in this way challenges and extends our courage, our love, our empathy for others and our creativity. We see and hear what others miss entirely.

I am not suggesting that everyone should be like us. Our gifts are rare, and that is good. But, as difficult as our bodies and minds can be, their very uniqueness brings strength and positive challenge both to we who live in these bodies and minds, and to society -- when we are appreciated, respected and celebrated.

We are unique and unusual people.

Why are we constantly being compared to the “normal”? What is important about us that is being denied? What are we and others turning away from?

Where do our gifts find full expression? How do our gifts benefit others? How can this aspect of our lives be celebrated and shared everywhere?

How do we naturally lead -- as our vulnerable selves and not as bad copies of other people?

Who listens to us now? How can it be made possible that more people will listen?

Leading With a Quiet Voice will be a day for us to explore these questions. We will explore my questions and your questions. We will share our lives.

We will not spend all day listening to people who talk. We will spend a lot of time in silence. We can move around. We can write comments or draw on the papered walls.

By the end of the day we will have made some personal decisions and some group decisions. We will take these ideas and decisions home. We will strengthen our leadership everywhere.

Listen with your heart

Allow yourself the gift if 26 minutes listening deeply, see what you hear about life, and about your self



all good things

Andy

Healing Our Wounds

Healing Our Wounds

I urge you to look more deeply into what is being said here and to tune into the wisdom that this beautiful soul is sharing - look up Daniel Gottlieb and buy and share everything he writes and says.

Thankyou Dan

Andy

By Daniel Gottlieb - Author of Letters to Sam

Dear Sam,


Shortly after my accident, an occupational therapist introduced me to an anti-gravity device that would help me gain some use of my arms. The therapist strapped me into slings counterbalanced with springs, so my arms were literally weightless. Splints were attached to my hands. In each hand I held a pencil with the eraser-end pointing down. Using the feeling I still had in my shoulders to move my arms and hands and manipulate the erasers, I practiced turning the pages of a book. As my arms gained strength, the therapist reduced the springs' pressure so I would become strong enough to hold them up without the device. By the end of the week, I was able to turn pages without any assistance. My wife and the therapist were impressed by how quickly I'd been able to master this. "Look how much you've accomplished in one week!"


I felt complete despair.


"Five years ago," I said, "I wrote a three-hundred-fifty-page doctoral dissertation. And now you want me to be proud because I can turn a page?"


Sam, I know there will be times when you are hurt. Even now, when things don't go your way, you feel terrible emotional pain. But I hope you won't blame yourself or someone else for the pain. And, strange as it sounds, I also hope you will not listen to people who try to talk you out of your pain or show you ways to fix it. Because if you try too hard to fix pain, it only takes longer to heal!


Inevitably, all pain is about longing for yesterday -- whatever we had before, whatever used to be. But when pain doesn't go away fast enough, we criticize ourselves for not getting over it, for not being strong enough, or even for being vulnerable in the first place.

Sam, that's not how wounds heal. They don't obey our wishes. Healing takes place in its own way and in its own time.

About a year after that bleak experience of struggling to turn a page, I was back at work. Alone in my office, I attempted to move a printed article from a filing cabinet and put it onto my desk where I could read it. A single staple held together the sheets of paper. As I slid the stapled sheets from the filing cabinet, they started to slither from my grasp. I knew from bad experience that if paper fell to the floor and lay flat, I would have to get someone else to come and pick it up. As the papers started to slide down again, I slowed them with the back of my hand pressing against the filing cabinet. As the papers landed on the floor, they formed a tent, staple-side up, that I knew I could recover. With careful maneuvering, I got my thumb under the staple and gingerly lifted the article up to my desk.

It took about twenty minutes. And as the article finally came to rest faceup on my desk, I felt great pride.

Then I thought back to the previous year. Why did I feel grief then and pride now?

A year before, I was longing for yesterday. This year, I was living in today.

My wound had been healing. Not because I wished it to, not on my timetable, and not by any fancy techniques. I wasn't even aware that I was healing until that moment in my office.

How did the healing come about? The way wounds heal is a miracle. Inevitably, they heal on their own. All we have to do is not let our hungry egos demand that the pain go away on a certain timetable. We need to have faith that the pain will pass. After all, pain is an emotion and no emotion stays forever.

Sam, you will meet a lot of well-meaning people who think they know ways that you can heal more quickly and feel less pain. They may be eager to suggest those ways and may even insist there are things you "should do." They do, indeed, mean well, and most are acting out of genuine caring. But before you take their advice, remember that everything a physical wound needs to heal is already in the body. Oxygen, blood, nutrients are all in there, ready to begin their work. And the moment you are wounded, the healing begins.


Emotional wounds are the same. Sometimes these wounds do not heal because the mind gets all involved and says things like "I should do this and I'll feel better," or "Maybe I could do that to repair the damage," or "I am hurting because of what another person did, and once they fix it, I will feel better."


All of this mind talk just interferes with the natural healing process. When you feel deeply hurt, you have everything you need in yourself to repair the damage. You want compassion, understanding, and nurturing in order to heal. But most of all, you need time.


When I am in a dark tunnel, I want to be with people who love me enough to sit in the darkness with me and not stand outside telling me how to get out. I think that's what we all want.


When you are hurt, be close to people who love you and who can tolerate your pain without passing judgment or giving you advice. As time passes, you will long less for what you had yesterday and experience more of what you have today.




Love, Pop

We all need to give

People who are seen as needy, labelled as weak, often dont get to give. Some research about people in a care home who shared the same diagnosis and health profile brings this into sharp focus.

The first group were given a pot plant by a carer who said 'dont worry we will take care of it'. The second group were given a pot plant and told by a carer that they would be responsible for the plants welfare.

So, the first group were passive (more of what they knew) and the second were active, tending their plant, keeping it fed and watered, enjoying its healthy presence. The second group lived for on average 18 months longer.

If you read this blog - you are probably interested on some level in the dynamics of difference, the ways in which we relate to each other and the need to reflect on what it takes to be together. I am aware that I have often over supported, assuming that my helpful ways are welcome. I am learning about the need to step back, to just be, assuming nothing and allowing space for reciprocity so that more mutual interdependent relationships can emerge.

There is great joy to be found in giving - it is fundamental to what makes us whole.

Andy

A Deep Respect for Family Life

"Love alone is capable of uniting living beings in such a way as to complete and fulfil them, for it alone takes them and joins them by what is deepest in themselves"
Pierre Tielhard De Chardin (1881 - 1955)

I saw a care home for older people selling its 'service' like this:-

"We care so you dont have to"

and I heard a mum who said that social workers were trying to 'get her to let go' and that it would be better if her son who is a lovely joyful presence, who happens to be autistic and have epilepsy, were to have his own life away from his mum and his big brother.

In a place I managed their was a pervasive culture in which parents were labelled and blamed and judged - 'they dont care' , 'they are over protective' , 'they are always complaining' were the schemas amongst managers and staff. The workers had not considered how it is to trust a group of people to take care of and asist your family member day after day...or how it is to be away from the people who love you into the hands of people who don't. The family support group was a place where we were able to get closer to the truth.

There is a subtle sense in which when 'services' get involved something has changed forever. The sense that the person loses some deep sense of family identity by becoming a recipient. I have worked hard in seeking to provide respectful and useful support for much of the last 20 years and I know how difficult it has been for me to retain my own sharp sense of family and of the value of intimacy with families in the work that I have done.

Family life is sacred, the fear and pain that has been a feature of the lives of many disabled people is frequently not explored or understood.

My plea is to make explicit our need to understand each other - a willingness to listen profoundly can be so healing and can create the conditions where real partnership and solidarity can emerge.

Andy

The intention to 'move in closer'

I have been thinking about an experience last autumn when I was taken to meet people in a nursing home by a lovely woman who manages part of a local Age Concern. We signed in and spent some time meeting some of the residents who lived on the ground floor. We respectfully knocked on some open doors and sat beside people for a few minutes. Most of the people we met wanted to hold hands while we sat with them and none of them wanted us to leave.
We then headed up to the 'dementia floor'. On this floor people were sitting around the edge of the 'day room'. The nursing assistant was warm and welcoming and took time to ensure we were introduced to everyone - except one woman. She was rocking violently and 'whimpering' constantly with occasional shouts. A tray table had been placed against her knees (to stop her standing up) and she was drumming her knuckles against the hard surface - they looked sore and blistered. My colleague from Age Concern asked who the lady was and began to talk with the nursing assistant. I felt uncomfortable having not been introduced so bent down to say hello. I joined in with the drumming on the table and rocked a little, sensing there was no value in using words. I smiled as the woman stopped for a moment and looked up. More drumming, taking turns led to holding hands and quiet faces. We were together.
It was uncomfortable to leave and I was struck by the impact this short interaction seemed to have on both the nursing assistant and the Age Concern manager, there was talk of a need for training and more time to reflect on what had happened....

I feel there is a subtle distancing effect in the lives of people who are seen as different, people who may be defined by their labels and seen as 'less than' or 'different to' the people who are around them. I think that in 'creating togetherness' there must be a firm intention to 'move in closer' to counteract this separation that is so common. In my experience it always serves me to move in closer to the people I meet, I learn more about myself and about what it takes to give and gain a sense of value. It is this moving closer that is needed to build community.

A poem that connects with the need to move in closer:-

"Crabbit Old Woman"

What do you see, what do you see?
Are you thinking, when you look at me-
A crabbit old woman, not very wise,
Uncertain of habit, with far-away eyes,
Who dribbles her food and makes no reply
When you say in a loud voice,
I do wish you'd try.
Who seems not to notice the things that you do
And forever is loosing a stocking or shoe.
Who, unresisting or not; lets you do as you will
With bathing and feeding the long day is fill.
Is that what you're thinking,
Is that what you see?
Then open your eyes,
nurse, you're looking at me.
I'll tell you who I am as I sit here so still!
As I rise at your bidding, as I eat at your will.
I'm a small child of 10 with a father and mother,
Brothers and sisters, who loved one another-
A young girl of 16 with wings on her feet,
Dreaming that soon now a lover she'll meet,
A bride soon at 20- my heart gives a leap,
Remembering the vows that I promised to keep.
At 25 now I have young of my own
Who need me to build a secure happy home;
A woman of 30, my young now grow fast,
Bound to each other with ties that should last;
At 40, my young sons have grown and are gone,
But my man's beside me to see I don't mourn;
At 50 once more babies play around my knee,
Again we know children, my loved one and me.
Dark days are upon me, my husband is dead,
I look at the future, I shudder with dread,
For my young are all rearing young of their own.
And I think of the years and the love that I've known;
I'm an old woman now and nature is cruel-
Tis her jest to make old age look like a fool.
The body is crumbled, grace and vigor depart,
There is now a stone where I once had a heart,
But inside this old carcass, a young girl still dwells,
And now and again my battered heart swells,
I remember the joy, I remember the pain,
And I'm loving and living life over again.
I think of the years all too few- gone too fast.
And accept the stark fact that nothing can last-
So open your eyes, nurse, open and see,
Not a crabbit old woman, look closer-
See Me.

By: Phyilis McCormack

Andy

Being with People that the World Rushes By

I had the pleasure of sitting with a gentle soul today who was asked what she was passionate about - she replied very quietly that she 'loves being with people that the world rushes by'. I asked her what she meant and she told me that she and her husband had spent time in Uganda and that on their return they were changed - they saw the world through new filters. They decided that they were interested in living with 'enough' and no more and that only one of them would work, leaving capacity for presence in the lives of people who would particularly benefit from it. So life is made up of solid, loving family life, friendship (and advocacy when required) to a local citizen who has a disability, volunteering at the local primary school (teaching recorder) and running a group for local older people. Beautiful, simple, nurturing - it made me think about a willingness to slow down, to be still and to connect.

So many lives seem out of balance, with a frantic feeling. The planet would thank us for being more tuned in, more mindful about our way of being.

Thankyou - maybe we should all take some time to reflect on 'how much is enough'.

warm regards

Andy

The Second Glance

'the second glance' from Nic Askew on Vimeo.

Click bottom right corner of player to watch in full screen. Click escape to return to blog.

This film invites us to consider the judgements we make and the fear that drives them. A heightened level of awareness of what we percieve and what is real creates the potential for deep change in what we see, hear, think and feel - through this togetherness is possible.

Thankyou to David Roche for this spectacular illumination and to Nic Askew for being such a skilful witness.

Andy

Stand by Me

thanks to Noelle for passing this on - we all need this - i call this standing alongside 'solidarity'. You feel it deep inside when it is present - it cannot be forced or dictated, it is deeply authentic. please take 5 minutes to watch the film - it is beautiful.

Andy

We live for each other

I am sharing these words from a contact i made through an on line forum as i found them very moving and relevant to the theme of creating togetherness - this level of intention is what it takes to build community - Andy

"Im currently helping to set up, on a volunatary basis, a Good Neighbours Association for the elderly and isolated and what you are doing has given me some good ideas and inspiration. My own father has come to live with me recently, he has dementia but I feel we as a family are blessed to care for him in these later stages of his life. My children are learning about compassion in a way no book or program can teach them...my 10 year old loves to make dad laugh and the radiance that bounces off his face at seeing grandad laughing just lights up the home. I truly believe that, despite the west bashing we see in some of the literature (ie that the west is so materialistic and has lost its spiritual base), just the sight of compassion in action fans the flame of compassion inside us all. I see this whenever Im out with my dad, at least one person makes a commenton how lovely it is to see such care and well done etc. Or how they wished they had a father to look after. My other friends, usually asian women, in the same boat have also reported similar statements. "