Connectivity and Community: Nothing About Us, Without Us #12 #cong19


Technology can transform lives and foster movements. Disabled people are using it more to organise and access local communities’ structures and services as well as to build strong collectives advocating social justice and highlighting that impairment and disability are human rights issues. Disability voices must always be led by disabled people and effective use of technology is creating more aware communities both locally and nationally.

4 Key Takeaways:

  1. That we have not had the conversations surrounding disability and impairment, rather than fully accepting disability as a matter of social equality, we still perceive it as a health issue. Crucially, it must be disabled people that lead these conversations.
  2. Communities can take many forms, some based on identity, locality or political awareness. Disability is a unique community because of it’s intersectionality of identities and impairments. How do these interact?
  3. Disability is mostly a social and cultural construct. Nonetheless, it is the only form of difference that we believe must be brought back to a level of ‘normality’ that we still measure as not just right.
  4. Connectivity and technology can create communities, it can be utilised to challenge issues that disabled face such as isolation and lack of physical transport. It can be used an effective tool to motivate and organise a political collective seeking equality.

About James Casey and Peter Kearns:

Peter Kearns has worked for many years as a lecturer in Disability Studies. In the mid 1990’s Peter established THE WORKHOUSE, a disability consultancy company involved in equality/mentor/arts training in Ireland, Europe and Asia. Peter was a Community Support Consultant with Disability Equality Specialist Support Agency (DESSA). James Casey has worked as a lecturer, editor and equality consultant. James’ research focused on how culture constructs and represents physical disability. Peter and James are currently working for Independent Living Movement Ireland on the ONSIDE project. Both are disabled advocates.

Contacting James Casey and Peter Kearns:

You can connect with James via email.

By James Casey and Peter Kearns

In this age of equality, we believe, we hope, that we are finally dealing with the ghosts of the past, that we have begun to attempt to fasten the lid back on Pandora’ preverbal box of unsettling Irish social history. Ireland is a much better place than it was twenty or thirty years ago. Diversity and intersectionality are part of our sense of communities. Our sense of identities and self. This is healthy, this is positive. For a long time, the land of saints and scholars was a conservative, homogenous state, not the landscape of fair, virgin, maidens dancing at the crossroads, but an oppressive society intolerant of the slightest divergence from the accepted norm. Difference, diversity and perceived deviance was harshly and cruelly dealt with. We all know the stories – true, brutal stories. The leaking of facts about single mothers and children’s homes (prisons), about attacks on gay people, the treatment of women and travellers and anyone else church and state deemed a sinner. All this happened in many of our living memories – this isn’t the sagas of long dead kings, or rising up against colonial oppressors but events, issues and experiences we had as a society, as communities. You hid your difference, or you left, or it was taken away from you, forcefully.
But, what if you could not hide your difference? What if you were the only difference in your community? What if you could not leave? For many years the only form of outward difference in our communities were disabled people. We, us, were a shattered, oppressed community, segregated or castigated for our difference. Robbed of our illusive physical purity we were rolled out to be cured or treated or, most of the time, hidden or locked away. But we existed, we fought and we are still fighting. In this age of equality our disabled community, a community that is the true reflection of diversity and intersectionality is still not equal, public transport is a overly complicated, disjointed mess of inaccessible nonsense (when we compare it to our European neighbours), and a huge financial value has been placed on disabled people by private industry of service providers and charities, with little actual service to the disabled people themselves.
Nonetheless, there is an exciting and fresh energy to the disability rights and independent living movement in Ireland now. Disabled people coming together to form a collective from their communities. Underpinning this collective action is the big idea of disability, the social model. The social model is more than a model, it’s an ideology of equality, of freedom and fairness. It makes a distinction between a person’s impairment and that impairment’s interaction with a inaccessible society and environment. For example, a wheelchair user’s impairment is that they have mobility issues walking or standing, but their disability only happens when they cannot use their wheelchair because the streets and buildings are inaccessible, so the person’s disability is caused by an inaccessible society. The social model isn’t all about having fancy technological aids to enable a disabled person become more equal. It isn’t about making the whole planet accessible (we’re not expecting ramps up the Acropolis…but a few would be nice). The social model is about human rights, it’s about equality, it is about disabled people as active, and productive, citizens and members of their own communities. It is about disabled people accessing and enjoying the same, mainstream services and facilities as everyone else in their locales.
Independent Living Movement Ireland (ILMI) is the country’s only Disabled Persons Organisation. We are a rights based organisation that fully embraces and promotes the social model of disability and we hold firm in our belief that disability is an issue of human rights. Because it is. We have seen that change can happen, recent changes in Irish society are going some way to make us a more open, fair and equal society, but there are some that are still not equal. But things can change, things do change and we want change. Change in our communities, change in our society and change in our governments approach to flying money off to third parties and never to the disabled person themselves. And we will achieve change. For disability is the one identity that links us all. But sometimes, we also need to start small, on a local community level. This is where change happens, where social revolutions being. Disability is ready for a revolution and Ireland is ready for more change.
Our new project, called ONSIDE, is a social model inflected enterprise where we will connect disabled people to their local communities, and make local communities more open and accessible to disabled people. The premise of the project is simple, but the outcomes could be huge. Over the course of the next three years we will recruit 375 disabled participants in the counties of Donegal, Sligo, Cavan, Monaghan, Leitrim and Louth and provide them with IT training in addition to the provision of a free device. With the laptop or tablet, and various speakers from local community groups and services, the participants will be able to make a genuine choice as what mainstream services in their local communities that they want to access.
The ONSIDE initiative will facilitate disabled people to embrace affirmative roles as active citizens in their local communities and will have the added benefit of creating more diverse communities. It will have a positive, and sustainable impact upon local communities, both disabled people and non-disabled people and will lead to a truly more inclusive society based on equality and participation. Public amenities, whether social, cultural, sporting or educational will benefit from a larger participation of disabled people and this in itself will illustrate their commitment to equality and real equity. It will create more diverse communities through connectivity.

Community – a Disability Perspective #2 #cong19


Community can have a profoundly positive impact on people living with disability but current structures and vocabulary needs rethinking.

4 Key Takeaways:

  1. 1 in 7 people in Ireland live with a disability and most of them acquired that disability at some stage in their lives. Any person who is disability-free today may have a life-long disability starting tomorrow. That is a fact of life.
  2. Once you have a disability, “community” is a much harder thing to access for a whole host of reasons ranging from physical access to prejudice. For people with intellectual disabilities – be they congenital or acquired – it is even harder still.
  3. In endeavoring to support people with intellectual disabilities, we as a society, take away the very things we ourselves most cherish in our lives. Most of these things come about through, and because of, community

About Sean McGrath:

Sean McGrath is a 35+ year veteran of the IT industry. He holds a first class honours degree in computer science from Trinity College Dublin. He is co-founder and CTO of Propylon, where he now heads up the R+D group focusing on computational solutions in the legal and regulatory domains.

He is the author of three books on markup languages published by Prentice Hall and has lectured in Trinity College Dublin and with the Open University.

He runs one of Ireland’s longest lived blogs at: Sean lives in Galway with his wife and three children. When not working in IT he is an avid amateur musician.

Contacting Sean McGrath:

You can contact Sean by email.

By Sean McGrath

According to the WHO about 15% of the worlds population lives with some form of disability. According to the National Disability Authority of Ireland, 1 in 7 people in Ireland has a disability. That’s about 13%.

It may come as a surprise to learn that the majority of that 1-in-7 number represents acquired disabilities. i.e. once healthy people who became disabled people at some point in their lives. It can happen to any of us at any time and will happen to a goodly proportion of us at some time in our lives.

For anyone living with a disability “community” often means something very different than what it means to the rest of the population. For people with intellectual/cognitive disabilities – be they congenital or acquired (e.g. brain injuries, dementia etc.) – the difference is often even more striking. Once you have a disability, “community” is a much harder thing to access for a whole host of reasons ranging from physical access to prejudice.

Let us play a game. Let us pretend for a moment that I have control over your future life. Now, think about the five most important things in your life in order of priority. The things you think of as the good things in life. The things that really make life worth living. Possible entries on your prioritised list include money,  vacations, health, family, a job you enjoy, independence, better looks, friends, a place to call your own. etc.

Now, what if I tell you that I am taking away two of them. What two do you want to give up out of the five? Not easy it is? Take a moment…

Which three did you decide to keep and which did you decide to give up?

I’ll bet you chose not to keep the vacations or the money-related items. I’ll bet you chose to keep family, a soul mate, your independence, friends, a place to call your own. Am I right?

Now here is the two part kicker of this thought experiment. Firstly, the very things you chose to keep above all else, are the very things we as a society tend to take away from people with intellectual disabilities. Secondly, those very things you chose to keep above all else, are found mostly in, and through, community.

For people with an intellectual disability, we take the word “community” and we redefine it. We label it “special needs” and until very recently we even used that abhorrent word “retarded”. We segregate these people from the rest of the population. We congregate these people into institutions “for their own good”. Sure, we see the odd “special bus”. We see the odd group of “special needs” going bowling at 11 a.m. on a Monday morning, but mostly we don’t see them at all. They do not live in our communities. They are not living with us.

We take away from them the very things we hold most dearly for ourselves. Do people with intellectual difficulties not value friends? Do they not value being able to make decisions for themselves? Have a place to call “home”? Of course they do but we mostly take these things away from them. We apply a so called “medical model” in supporting them. We keep them safe above all else. Quality of life? Less of a concern.

This is tragic. All the more so because it is an unintended side-effect of mostly well meaning people and systems that have evolved over centuries. Thankfully, change is afoot in Ireland – albeit very slowly.

The HSE’s New Directions policy[1] sets out a vision for how the lives of people living with intellectual disabilities can be transformed through community integration and through decongregation[2].

Ireland has finally enacted the UN Convention on the Rights of People with Disabilities[3] and has begun rolling out the Assisted Decision Making Act[4].

Grass roots initiatives are afoot such as the Inclusive Living Network [4] which aims at informing and supporting people living with disabilities to live their lives the way the “rest of us” want to live ours : in communities, accessing the simple things in life that are worth more than any amount of money to all of us.