Manifesto Point 3: Our lives are better when we focus on each other’s strengths, abilities, interests and gifts.
Introducing a Booklet from the Community Resource Unit Ltd: BUILDING BELONGING IN THE SCHOOL COMMUNITY: Finding Roles that Help Students Participate and Contribute
Download the Resource here.
This booklet has been designed for families and teachers of children with a disability from Kindergarten to High School.
Inclusion is about more than physical presence at school. It is about belonging, being valued, and being able to fully participate in that school community.
All parents want their child’s school years to be full and productive, for them to have opportunities to discover their gifts, to grow and to ‘shine’ in many small ways. Students with disability are vulnerable to only being seen for their challenges or negative stereotypes. Helping children have access to valued social roles is one way families and schools can guard against this vulnerability. Valued roles provide opportunity for connections, personal development, self-esteem (and much more!) both at school and across the whole of life.
We’ve made such progress in ending discrimination in Ireland in recent years. But still, there is one group of people left out. All these years later, disability live still don’t matter.
Original article from the Irish Examiner posted 28 July 2020
by Fergus Finlay
Disability Lives Matter. I wonder how that would work as a slogan? Would anyone, I wonder, be offended, the way some people are when they hear the phrase Black Lives Matter?
You hear it again and again, don’t you, the question ‘why are you singling out black people?’ What about the fact that all lives matter? What about women, what about children, what about people of a different colour? What about, what about, what about?
All the same conditions apply — the neglect, the discrimination, the injustice, and yes — the cruelty.
There’s a great irony here. While the notion of Black Lives Matter is still contested in the US, disability lives have been changed for the better by law in that jurisdiction.
And that law, the Americans With Disabilities Act, came into being because people with disabilities refused to settle for less.
You can read a fascinating current series in The New York Times, commemorating the 30th anniversary of the Americans With Disabilities Act. Or, if you have access to Netflix, do yourselves a favour and watch a movie called Crip Camp.
It’s about a group of young people who came together, around the time of the legendary Woodstock festival, at a ‘camp for the handicapped’ as it was called then.
The name of the camp was Camp Jened. They discovered all the things that young people were discovering in those days — sex and drugs and rock and roll, basically.
But they also discovered equality. Many of the young people, who had conditions like cerebral palsy, polio, and spina bifida, had never met anyone like themselves before.
It’s a modern word, whataboutery. It’s not in my edition of the Concise Oxford Dictionary (which dates from 1990). It basically means I’m going to undermine your argument by saying you’re just a hypocrite if you don’t accept that all lives matter as much as black lives.
Of course, the real hypocrites are the whatabouters. The thing they refuse to accept is that black lives matter because they haven’t mattered in the past. The age of slavery may be gone, but racism based on skin colour is alive and well.
Black Lives Matter is important as a phrase, not because other lives don’t matter, but because black lives have been the repository of a history of cruelty, neglect, injustice, and discrimination.
It’s important as a call to arms because nothing will change unless attitudes change.
It’s important as a statement of public policy because racism has become so embedded, so institutionalised, that it’s often impervious to the established law.
So I don’t want to be accused of whataboutery — because I believe absolutely in the importance of Black Lives Matter — when I say that I think the time has come to begin to loudly proclaim that Disability Lives Matter.
The discovery that they weren’t alone, and weren’t to be pitied, was transformative.
More than 10 years after they met in that camp, many of the people involved led a major sit-in of a Federal Building, and subsequently a march on Washington, to demand the signing of a single regulation, known as 504, that would ban discrimination against people with a disability in any federally-funded activity.
Later still, and in one of the most powerful scenes from the movie, the activists got out of their wheelchairs and crawled, step by painful step, up the approach to the Capitol Building.
They wanted to symbolise its inaccessibility and to dramatise their demand for what became the Americans With Disability Act.
The Capitol Crawl went into history because it fundamentally changed the dynamic and forced people with disabilities to be listened to.
It was disability activists who led that charge. And particularly a young woman called Judy Heumann, then a survivor of polio and now a world leader of the disability movement.
Judy Heumann still says that she sometimes has difficulty understanding why she is supposed to be grateful that she can have access to a disabled toilet. It’s a sentiment that many people with a disability in Ireland — and their families — could echo.
One of the defining features of the provision of services for people with a disability here is the notion that they should be grateful for what they get.
There was a Capitol Crawl moment in Ireland. Ten years after the American Disabilities Act, the Irish government — as the Celtic Tiger was getting into full swing — decided that maybe Ireland should do something.
So they produced a Bill, the Disabilities Bill 2001 — which they announced would ‘transform Ireland’, and finally give people with disabilities in Ireland some legal rights.
It did impose some obligations on public bodies around issues like accessibility. Every obligation in the Act was qualified by language like ‘as much as practicable’ and ‘if resources permit’.
And right at the end, there was an article — section 47 — which said, in the most explicit terms possible, that the State could never be sued if it failed to carry out any of its obligations under the bill.
That piece of legislation, as phoney as it was, almost caused a revolution. A major meeting was hastily organised for the Mansion House under the slogan ‘No Rights — No Bill’, to try to prevent the bill being introduced in that form.
Despite the fact that it was an awful night — February 19, 2001 — hundreds of people turned up to protest in appalling conditions.
As one of them said from the floor — “Yes, we have disabilities. But why does that give the government the right to think we’re stupid?” That meeting could have been a turning point.
The phoney Bill was withdrawn, the minister responsible for it, Mary Wallace, effectively lost her job, and Bertie Ahern instituted a ‘consultative process’ to draw up a new Bill.
It turned out to be just as phoney as the legislation. When the movement was worn out by the consultation process (actually a very long bullying process), the old Bill was replaced by a new Bill, which contained every qualification that had been in the old one — the only thing missing was the hated Section 47.
But the result was — and still is — that the only ‘right’ people with a disability have is the right to an assessment of their needs, and to get a statement setting out what those needs are.
They have no right whatsoever to have any of those needs met.
And to this day, even when people get their assessments, usually after an endless delay, they are basically told how meaningless they are.
It’s a great lost opportunity. The great unfought civil rights campaign. We’ve made such progress in ending discrimination in Ireland in recent years.
But still, there is one group of people left out. All these years later, disability lives still don’t matter.
Paul Alford was born with a mild intellectual disability and grew up in institutional care away from his family. He tells MaryMcAleese about his fight to work in the community, travel independently and get a place he could finally call home. Paul and Mary do the turas together in the stunning Gleann Cholm Cille, Co. Donegal.
Turas Cholmcille is named after St Columba who lived and prayed in Glencolmcille 1500 years ago. One of Ireland’s patron saints, who is said to have brought Christianity to Scotland, he was exiled to Iona where he founded an abbey. Today pilgrims still follow in his footpaths to do the 15 turas or stations of this beautiful Donegal walk.
As Mary and Paul set off on their pilgrimage, he tells her about growing up in the 1960’s, when it was common to put disabled children into institutional care. ‘I had a family living in East Wall, but I never lived at home’, he tells Mary. ‘I was always away at these boarding places. It was a hard life. You lived in dormitories and if you didn’t behave you were hit with a cane. I felt upset and used to get distressed a lot, but I used to see my parents at the weekends. My mother and brother used to come out on a bicycle and bring me a few sweets and have a chat with me.’
Paul lived and worked in residential care for over 50 years, but always dreamt of a more independent life out in the community. As an adult he became involved in advocacy work for people with disabilities, because he was unhappy with the living and working conditions.
Paul has now worked in Inclusion Ireland for over 14 years and has traveled the world on his own. He has also finally been able to buy his own home.
Living in institutions for so many years had a profound impact on Paul’s relationship with his parents. ‘I was angry with my parents and I thought that they were like strangers to me, because I never lived at home in my life. I loved to see them, I loved my mother and father, especially my father Jim – he was a nice man. I would pray for them and I think they are looking down at me. They would be proud of me getting my own house and having a proper job and wages. I have surprised myself at getting this far, I thought I’d never achieve this in my life’.
Begin again to the summoning birds
to the sight of the light at the window,
begin to the roar of morning traffic
all along Pembroke Road.
Every beginning is a promise
born in light and dying in dark
determination and exaltation of springtime
flowering the way to work.
Begin to the pageant of queuing girls
the arrogant loneliness of swans in the canal
bridges linking the past and future
old friends passing though with us still.
Begin to the loneliness that cannot end
since it perhaps is what makes us begin,
begin to wonder at unknown faces
at crying birds in the sudden rain
at branches stark in the willing sunlight
at seagulls foraging for bread
at couples sharing a sunny secret
alone together while making good.
Though we live in a world that dreams of ending
that always seems about to give in
something that will not acknowledge conclusion
insists that we forever begin.
What does Person Centered mean? A Conversation with Jack Pearpoint & Lynda Kahn
Watch the interview here
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Research Report: Supporting people to live self-directed lives in the community: Learning from 54 Irish projects
Founded in 2008, Genio works to achieve a vision where all people are valued and supported as equal members of society.
Genio’s current programmes in Ireland are reaching whole populations of need in disability, mental health and homelessness in Ireland, in many cases underpinning national reform programmes.
Genio is a European organisation based in Ireland working with philanthropy and government at national and EU levels. Specialising in social service transformation, Genio has a deep understanding and track record of complex system change and combines fund-management, capacity-building, action research and impact-measurement to effect public service reform. The hallmark of Genio’s work is to strive to ensure service user involvement at every level of service design and delivery.
This work has been supported by the Atlantic Philanthropies and is now being sustained by Government. In the last 10 years Genio has helped to facilitate change and improvements for over 8,500 people across disability, mental health, dementia and homelessness services.
In 2014 Genio published a research report on how to support people with disabilities to live self-directed lives in the community. This research was drawn from 54 innovative projects across Ireland that were supported by Genio.
The paper outlines the key learning from 54 projects which have been supporting people with disabilities and mental health difficulties to move, usually from institutional settings, to live self-directed lives of their choosing in their local communities. The paper describes the implementation learning that has taken place; how this happens in practice; and the factors which lead to and support positive outcomes for the individuals. The paper draws on a significant body of data collected from these projects during on-site visits which included meetings with the project leads, key staff and the people being supported as well as family members, advocates and other allies.
The following characteristics have been identified as most strongly associated with good outcomes for the person and the organisation;
- Multi-level leadership – there should be ‘a champion’ at all levels of the organisation who supports and drives the move to a new way of supporting those using the service.
- Involving families and allies – needs to be done in a way that acknowledges their concerns, that considers how they want to be involved in supporting their family member and that considers the wishes of the person.
- Engaging and consulting with stakeholders – engagement should be future-focused on how different stakeholders are going to contribute to the new supports being developed.
- Staff skills and training – staff need to be trained/supported into these new ways of working.
- Readiness -the starting point should be that everyone is ready to move, with the emphasis on what supports needed to be put in place to ensure this happens safely and in a way that is designed by the person.
- It’s about more than housing – time should be built in for a process of really getting to know the person so that informed decisions can be made about accommodation options.
- Building strong and lasting relationships with the community – links with the community should be made in a very intentional and purposeful way for each person based on their abilities, contributions, wishes and needs.
- Start small and ‘model’ change – those involved act as ‘peer models’ for the process and the change involved. For those who will be moving, seeing their peer preparing and then successfully move, can give others encouragement that this is possible.
- Challenge of reconfiguration – in order to provide the supports for those who have moved, existing resources must be reconfigured so that the supports can move with the person.
- This takes time – to be done really well for each person, this process takes time.
- Focus on outcomes and monitor progress – progress can be greatly assisted by monitoring progress towards agreed outcomes.
Living Room Conversations…ideas that influence Person Centered Work
John O’Brien and Connie Lyle-O’Brien have spent a lifetime moving our thinking about how people with developmental disabilities can be supported, shifting from institution and program centered life, to the person centered life of citizens contributing to the communities where people live. This video explores a framework for thinking that John and Connie began to develop more than 40 years ago, incorporating the five valued experiences and the five accomplishments that can shape the intent, focus, and delivery of support.
Click on the picture to watch the video or click here