By Sean McGrath

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

3 Key Takeaways:

• • 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.
  • 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.
  • 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.

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.

[1] https://www.hse.ie/eng/services/list/4/disability/newdirections/
[2] https://www.hse.ie/eng/services/list/4/disability/congregatedsettings/
[3] http://www.inclusionireland.ie/content/page/united-nations-and-disability
[4] https://www.findersinternational.ie/news/lunacy-act-replaced-assisted-decision-making-provisions/
[5] https://inclusivelivingnetwork.ie/

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: seanmcgrath.blogspot.com. Sean lives in Galway with his wife and three children. When not working in IT he is an avid amateur musician.