Kerry woman, Lynn Fitzpatrick’s brother, Bernard, was permanently brain damaged at birth. He then got meningitis and developed a severe epilepsy which means he is unable to walk, talk, wash, feed or dress himself.
Doubts around his future care led Lynn to write to her local paper and highlight the confusion which now surrounds the description and care of those with severe disabilities.
In her recent submission to the Kerryman newspaper - which has attracted much attention on social media - she highlighted her determination to ensure the needs of her profoundly disabled brother will continue to be catered for in a residential facility called St Mary of the Angels in Beaufort, Co Kerry.
"When I was growing up, my brother was handicapped. Today he is physically and intellectually disabled. Though his condition has not changed, the label used to describe him has."
Lynn explains how she has has been trying to make sense of why a word that "carried connotations like ’love’ and ’special’, was dispelled from her brother’s narrative and deemed politically incorrect.
"Handicapped is a term I am afraid to use," she wrote, "because I fear the wrath of the politically correct and the high-horse brigade. I fear that it would be the stick that Inclusion Ireland, St John of God management and advocates use to beat me with when I try to oppose the ’Time To Move On from Congregated Settings’ policy.
"This could strengthen the argument of self-appointed ’independent’ advocates that they are better placed to speak for my brother, than his own family. That is a risk I cannot take, when my brother’s home, community, health and wellbeing are at stake."
Bernard is a long-term resident of St Mary of the Angels, where Lynn has seen him flourish. "I believe in St Mary of the Angels. This is rooted in my experience growing up, seeing first-hand what a special place it is and how happy my brother has always been there, how he has thrived."
In her letter Lynn argued that the term ’disability’ is too broad to cover all the conditions people live with in Ireland.
"Of the 27,000 people in Ireland registered on the National Intellectual Disability Database, 41% have a mild intellectial disability while 36% have a moderate disability. This means that 77% of people who share the category of ’intellectually disabled’ with my brother are vastly more abled than him. My brother and people like him make up only a tiny proportion of this group - 4%."
Lynn says the HSE is justifying the ’Time To Move On from Congregated Settings’ policy with the fact that many people living with disability have campaigned for independent lives.
"Many people with disabilities have long advocated independent living and for some, who are able to live independently, this is great," she wrote. "But their campaigning has been for independent living for all and this has resulted in a policy requirement being placed on my brother to be ’an ordinary person, living an ordinary life, in an ordinary place’; a policy that removes his right to be an extraordinary person and live in an extraordinary place, where he is very happy."
Since her letter’s publication Lynn has been touched by the many responses she has received.
"I have been really surprised and heartened by the reaction. I knew when I wrote this article a couple of weeks ago that I needed to get it out into the world, I felt compelled to, but I didn’t have any expectations. I really appreciate the kind words that people have said both on Twitter and Facebook and I am delighted that it seems to have struck a chord and resonated with a lot of people.
"I wrote it and spoke from my heart, it is coming from a good place and I hope that good will come of it. Even for those who don’t agree with me, thank you for engaging in the conversation. I know this is a difficult conversation to have, but I feel it is vital that we have it."
Lynn hopes her story will help keep facilities such as St Mary of the Angels open to cater for people like her brother.
"My ultimate hope is that the wonderful legacy and pioneering work that has gone on for over 50 years at St Mary of the Angels will not be squandered and wasted by closing it down as per 2011 HSE ’Time to Move On from Congregated Settings’ policy," she says.
"I believe the legacy of St Mary of the Angels stands as a shining example of what life could and should be like for the most special and vulnerable people in society. They not only need, but deserve this level of care, doorstep facilities, onsite therapies and they deserve to be part of a special community within the wider community. A place where they share characteristics and have things in common with their neighbours and where they are known, loved, recognised and cherished by those living in the surrounding area.
"These places are living, breathing proof that this model of care works and is entirely appropriate for people similar to my brother.
"I want people to wake up to the reality that places like SMOA are communities in their own right. I want people to think about why it’s okay to have Special Olympics but not Special Communities.
"I 100% believe that the term ’disability’ is far too broad and I want people to stop generalising and stop assuming. I want the 4% to have a voice. I wish that some of the people who insist on sameness and ordinariness to stop, open up their minds and hearts and celebrate differences."
Read Lynn’s full article here