PRELUDE – I wrote this letter to an Editor in response to an article which featured in our local newspaper, about a disability known as Spina Bifida.
Needless to say, I am still waiting for a reply…..
My name is Simmonne. I read the article entitled ‘Love and Hope’, with both surprise and concern and with a fervent hope that you may consider a follow up article during 2022.
I am a 54-year-old woman and I was born with Spina Bifida in 1967.
This article surprised me for a couple of reasons. Firstly, this disability is rarely in the headlines and therefore remains relatively unknown by many people, if not the majority within society.
So, even though I thank you for bringing awareness to this disability, I would like to pose a different story.
The parents in this story did not ‘lose’ 2 babies with Spina Bifida. Instead, these pregnancies were terminated.
I have no intention of judging these decisions. However, I am very concerned about what the medical profession is still telling parents about the possible outcomes for babies born with this disability.
After all of these years, with my generation of adults who were born with this disability having achieved and continuing to achieve so much, by anyone’s definition, I struggle to understand why it appears that the bleak information given to our parents so many years ago, may well be the same information given to parents today.
Yes, it is true that the majority of my peers with this disability are mobility impaired. However, some of us are not – including myself. Nevertheless, the common denominator most of us seem to share is impaired bladder and bowel continence.
Many of my peers were sent to Yooralla during the 1970’s because they couldn’t walk. Not because they couldn’t think. When they were allowed to transition to mainstream education, several of my peers achieved University Degrees, instead of employment at Sheltered Workshops, which was expected of them. Some of my peers travelled overseas (even independently) and some achieved professional careers (Social work, Youth work, Child Protection, Teaching and management positions within government departments).
Several of us are married (some divorced) or are in ‘romantic’ relationships and some are even parents.
I am a divorced, single parent of 22-year-old twin sons, who have Autism and Intellectual challenges. I also teach Community Services and Disability qualifications at Melbourne Polytechnic.
I was genuinely interested in the medical procedure described in this article – it is amazing how far science has come.
Yet, I am equally concerned that preventing Spina Bifida at all costs will be the only narrative, the only story, to be told and to be known.
I sincerely wish you an enjoyable and festive holiday season!
Thank you for your time.