Language
  • English
  • French
  • German
  • Italian
  • Portuguese
  • Spanish
  • Swedish

Insurance Funding Request

Did you know Firefly products may be funded by your insurance?

Learn More
Back to Firefly Blog

A Loaded Question

A Loaded Question

The first simply questions whether or not your child’s diagnosis of Down’s Syndrome came as an after-birth shock, or whether you were prepared in advance.

It acknowledges that prenatal screening is a choice, but with, perhaps, a hint of prurient curiosity as to whether there really is anyone who would choose to continue if they knew in advance.

The second also acknowledges choice, but wonders whether you chose not to test, or were let down by some fault in the screening process. It suggests a hierarchy of empathy: those who fell through the holes in the medical science safety net are deserving of it, but not those who declined screening.

In short, it wants to know whether you are responsible for your own situation.

The third denies choice, as it assumes that, because test exists and is (widely believed to be) now infallible, that there is only one, reasonable, responsible course of action – termination.

It seeks to lay blame.

Society expects that people will test and terminate, any who refuse to do either of these things are seen as unreasonable and irresponsible, selfish, even.

It has no empathy for anyone who has a child with Down’s Syndrome because it asserts that they made the wrong choice.

I don’t have an issue with prenatal screening itself: that is not the problem.

It is the societal attitudes and pressures surrounding it that concern me.

The prevailing narrative is that having a child with Down’s Syndrome is the worst thing that could possibly happen, and that the purpose of prenatal screening is to eradicate the problem.

Some countries have declared that they will be ‘Down’s Free’ in the near future.

Since Down’s Syndrome is not hereditary*, but a naturally occurring chromosomal arrangement that appears in all races, and has done so throughout history, the only way for any country to be ‘Down’s Free’ is for it to make prenatal screening and termination ‘compulsory’, not necessarily by law, but by societal expectation and pressure. Peer pressure, if you like.

This is facilitated when the status quo perpetuates outdated, negative stereotypes of the condition and those who have it, and by suggesting that they are a drain upon society but make no contribution to it.

Suddenly ‘test and terminate’ becomes the rational, the responsible, the only, thing to do, as it appears to benefit not only the individual family but all of society.

Lives are measured against each other in financial terms, by their potential future cost to the state in terms of health and social care.

Those found to be potentially more expensive than the average are then compared again, not to another human this time, but against the cost of a prenatal screening programme.

Lives are commoditised; it is their financial profile alone that decides whether they are considered worthy of keeping, or should be disposed of.

None of this takes account of differences beyond the number of chromosomes.

Not all people with Down’s Syndrome experience ill-health, or require social care.

When they do, then the slightly lower life expectancy of those with Down’s off-sets that. In any case, their families pay tax and national insurance, indeed, some adults with Down’s themselves work, and, presumably, pay tax and NI.

If we’re talking about cost-to-society-versus-contribution-made, then perhaps we should start screening foetuses for genetic predisposition to criminal behaviour – the cost of their potential incarceration must be huge.

But that is neither possible nor ethical, nor even desirable: because it’s eugenics.

As I stated above, I am not against screening per se.

But it seems to me that a potential benefit of prenatal screening has been largely overlooked.

As well as offering safe, early detection for those women who would choose to terminate, it could, and should, also be marketed and used to enable practitioners to offer extra-vigilant, possibly even tailored, antenatal care to those mothers who choose to continue with the pregnancy. But this isn’t happening.

Perhaps it is deemed too expensive.

The reality of life with Down’s Syndrome in the twenty-first century is that a significant number (you might say even the majority) of families with a member who has Down’s report that they enjoy good quality of life.

Ninety-nine percent of adults with Down’s class themselves as content with their lives, and ninety-seven percent of siblings report being proud of their brother or sister with Down’s.

Nobody is denying that we face greater challenges, sometimes considerable ones, with seventy-nine per cent of parents reporting that they have a MORE positive outlook since parenting a child with Down’s, there is clearly something deeply life-affirming going on in these family relationships.

Although there are many things my son cannot do that other eight-year-olds can, he gives as much as he receives, and has made me a bolder and happier person.

Oh, and many of the proud siblings I mentioned go into the caring professions – and that, my friend, is surely a tangible benefit to society.

In her documentary, 'A World Without Down’s Syndrome', actress and writer Sally Phillips said ‘... if we have a society that is unable to care for people, the problem is not the person’.

But society, it seems, does not like to be told that it is wrong.

*except for a very rare form, Translocation.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

47 Stripey Socks

Meet Our Blogger

Down’s Syndrome, my family and me – one mum’s account of family life with an extra chromosome.

View Kerry’s Profile

Become a Firefly Blogger

Would you like to write for Firefly? Join our blogger network of parents, therapists and professionals.

Get In Touch

Become a subscriber today

Join over 40,000 subscribers to our weekly newsletter with insightful articles just when you need them.

Join Mailing List

By using our site you agree to our use of cookies. Click here for more info.

Accept & Close

No Interest if paid in full in 6 months on

Purchases on $99+

US Customers only. Subject to credit approval. See terms below

Paypal Credit

Pay now or pay over time with PayPal Credit. Just use PayPal Credit in PayPal checkout.

Subject to credit approval.

Purchases of $99+:

No Interest if paid in full in 6 months on purchases of $99 or more.

  • A minimum monthly payment is required and may or may not pay off the promotional purchase by the end of the 6 month period.
  • No interest will be charged on the purchase if you pay it off in full within 6 months. If you do not, interest will be charged on the purchase from the purchase date at the Purchase APR applicable to your account.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00.
  • Individual items that are less than $99 qualify for special financing when combined for a total of $99 or more in a single transaction.
  • Multiple separate transactions of less than $99 per transaction cannot be combined to meet the minimum purchase amount.

Purchases of $98.99 or less:

Buy now and pay over time with PayPal Credit when you spend $98.99 or less.

  • If you pay your balance in full each month by the payment due date that is on your statement, you can avoid paying interest.
  • Or, make minimum monthly payments, or any additional amount of your choosing, until you've paid off your balance according to your standard account terms. Please note, interest charges may apply.
  • We'll send you email reminders when your payments are due. You can also keep track of your account and view your statements online at any time.

About PayPal Credit

  • PayPal Credit is a reusable credit line available on purchases at thousands of stores that accept PayPal. It's also available for purchases on eBay and exclusively at thousands of other online stores. Plus, it comes with the same security and flexibility you trust from PayPal.
  • If approved, we start you off with a minimum credit line of at least $250. See FAQs for more info.
  • For New Accounts: Variable Purchase APR is 25.49%. The APR is accurate as of 6/1/2018 and will vary with the market based on the Prime Rate (as defined in your credit card agreement). Minimum interest charge is $2.00. See Terms and Conditions tab for more info.
  • If you miss a payment your late fee could be up to $38, even less if it's your first time. See FAQs for more info.

Please wait...