Several times in recent months, while the debate about the introduction of Non-Invasive Prenatal Screening for Down’s Syndrome has been ongoing, I have heard different people (some of them ‘personalities’, some of them not) asserting loudly on TV and radio how very, dismally, hard and miserable life is for the parents and siblings of individuals who have Down’s.
When challenged with a more positive viewpoint, they tended to dismiss it as a sugary, rose-tinted fabrication.
Yet NOT ONE of these ‘pundits’ actually had a child or a sibling with Down’s syndrome themselves.
What makes these people imagine that they are qualified to pronounce on something of which they have no experience?
They give what is simply an opinion, one based on ignorance, but because they are speaking in the media, it will be assumed by those watching/listening/reading that their words carry some authority.
I am the mother of a child with Down’s. I see the relationship between Freddie and his siblings in action every day. I live this life, and so I think I am more qualified to speak about it with authority than they are.
But it is difficult to claim the right of reply when you have been branded a liar.
There are even a few in the Down’s Syndrome community who complain that I (and others like me) are not telling the truth.
What they really mean is that we are not telling their truth. These families have obviously had a much more difficult experience than I have had. That is their truth, and it is just as valid as mine.
Likewise, parents and siblings are also individuals, with differing abilities, health, needs and tolerances.
Each family dynamic is unique; we can each only tell our own truth.
I am not a liar.
I tell my own truth as it is, and put it out into the public arena to be counted among the real-life experiences of others.
Each ‘truth’ contributes one little piece to the jigsaw puzzle picture of Down’s Syndrome.
I am one of the 79% of DS parents who report feeling more positive after raising a child with Down’s.
But that doesn’t mean that 21% felt less positive after: some of the people in that percentage will have reported feeling just the same as before.
What it does mean is that the majority of those questioned reported a positive experience, overall, of life with Down’s Syndrome.
Unless 79% of ‘Down’s Syndrome parents’ are liars.
But who’s going to listen to me; after all, I’m not ‘her off the telly’, what do I know about anything?
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