A reflection on his disabled brother

To read on The Kerryman website:

When jargon fails the vulnerable

Lynn Fitzpatrick argues the HSE’s ‘Time to Move On’ policy fails people like her brother Bernard who comprise a voiceless minority of the severely disabled for whom the possibility of independent living in a community setting is a nonsense

Published 11/02/2017

reflection

Lynn on one of her regular visits to brother Bernard in the place he calls home: St Mary of the Angels

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.

Despite the fact that the term handicapped is now considered politically incorrect, the word has survived in English dictionaries, albeit with a disclaimer that it is ‘old fashioned’ (Cambridge) and ‘offensive’ (Oxford). I looked it up because I was curious as to why a term that, at least for me as a child, carried connotations like ‘love’ and ‘special’, was dispelled from my brother’s narrative.

In Cambridge, handicapped means « a condition in which part of your body or mind has been permanently damaged or does not work normally ». In Oxford, it means « Having a condition that markedly restricts one’s ability to function physically, mentally, or socially ».

My brother was permanently brain damaged at birth and as a result he got meningitis and suffered from severe epilepsy. Today he can’t walk, talk, wash, feed or dress himself – he requires nappies and bibs. To me, there is nothing offensive about the term as defined in the dictionary – it is an accurate description of my brother’s condition and gets across its severity.

Nevertheless, handicapped is a term I am afraid to use, not because I think it in any way demeans or would upset my brother, but 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. I play ball and use their language because if I don’t, they can say that I am ‘backward’, ‘ignorant’, ‘out of touch’ – they can discredit and point at me and say « See, we told you, the families don’t know what’s best. » 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.

And so I use their language and their labels to refer to my own brother, even though I think that doing so is misrepresentative of his condition and has serious consequences. Let me explain.

The term ‘physical and intellectual disability’ is exceptionally broad and non-specific. Disability can refer to and mean so many things, for example, arthritis, mobility challenges, loss of sight, MS, Alzheimer’s, Parkinson’s, acquired brain injury, etc. An elderly person with arthritis could live independently, a person without sight or mobility could be able to communicate; skills and abilities like these would set them apart from my brother. Some people referred to as ‘intellectually disabled’ have Down syndrome or Autism, many of them can compete in the Special Olympics and this too sets them dramatically apart from my brother.

Of the 27,000 people in Ireland registered on the National Intellectual Disability Database, 41% have a mild intellectual disability while 36% have a moderate disability. This means that 77% of the 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%. There is also a 15% group, said to be severely intellectually disabled (4% are unverified). So what happens when you have such a disproportionate number of severe and profoundly disabled people sharing a category with mild to moderately disabled people? What happens when the majority can speak and decide for themselves and the minority cannot?

Well, what has happened up to now is that the majority have spoken and decided for the whole group. There is now a societal and political assumption that the majority and their advocates are best placed to advocate for the minority. It is accepted that the majority speak for and advocate for the minority, because after all, aren’t they all people with disabilities? This is why a lady born with cerebral palsy, who works as an advocate, was able to appear on an RTE programme this month and make sweeping statements about the lives of people like my brother in ‘institutions’. Despite the fact that these claims were certainly untrue for St. Mary of the Angels, they went unchallenged and I think that is wrong. What other group of people can have a home they love and are proud of misrepresented in such a manner? I find it very hurtful and am glad my brother is not aware of it.

One way that the HSE justify the ‘Time to Move On’ policy, is to remind you that « people with disabilities have been campaigning for this for years. » And it is true. Many people with disabilities have long advocated independent living and for some, who are able to live independently, this is great. 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.

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