It’s the last thing you want to hear when you are expecting your first child.
But there I was with my partner in a public hospital consultation room for the exciting 20-week ultrasound.
In most of these scans, the vast majority of attention is directed towards the expecting mother. Not in our case.
“What’s your disability?” he asked me.
I named the form of dwarfism with which I was diagnosed at 18 months old. He wrote down another disability. I corrected him.
“So your parents and siblings are short too?”
I told him that I am the only one in the family.
“Oh good, so it’s not genetic then.”
I explained that it is indeed genetic and gave a brief tutorial – there is a 50% chance this new person will inherent my disability.
“Oh,” he replied. Then turning to my partner, uttered those words: “I’m sorry.”
My non-disabled partner is now accustomed to these sorts of conversations.
We have had lengthy discussions about the value of the diversity of human experience, about how my disability makes me who I am and about how neither of us would change a thing. Yet this apologetic doctor felt obliged to offer sympathy.
“Don’t be sorry, we’ve actually thought about this!” she said. Then, paraphrasing activist Stella Young, explained: “We don’t think disability is a bad thing.”
From the very beginning of people’s lives, the medical system conditions us to think otherwise. Australia’s health system too often crosses the line into a normalisation system.
That line continued to be crossed during this appointment.
Despite it being noted from the previous scan, the doctor felt obliged to ask again: “Why haven’t you had the screening tests?”
These voluntary screening tests can show the chances of a child being born with certain genetic conditions such as Down’s syndrome or spina bifida.
From experience, we both knew the answer to the doctor’s question had to come from the one of us without a disability, lest a worried comment be recorded that we might not be in-step on the choice.
“We decided against it,” replied my partner. “It wouldn’t change anything.”
Then came the measurements. Through the ultrasound, the doctor measures the size of the foetus’ bones from head to toe and the computer spits out an estimate of how many days into gestation they are.
For a first-time parent, it was a thrilling experience. It was also terrifying.
Skull – 20 weeks, three days.
“Normal,” said Dr Sorry.
Forearm – 19 weeks, six days.
“Normal.”
Femur – 20 weeks, one day.
“Normal.”
I could not help but pipe up: “What do you mean when you say ‘normal’?”
“Within a week or two of the gestational age,” he replied.
He moved to the heart. The computer quickly picked up a heart rate of 150 beats a minute. Mine would not have been far off that.
Colours flashed on the screen showing blood pumping through different chambers of the heart.
From the angle we could see, there were just two chambers. Thinking back to high school biology, I recalled something about four chambers. Or was that cows?
Dr Sorry had a look of consternation as he dug further into my partner’s belly, each tick from the clock on the wall seeming ever slower.
After hours, or at least seconds, a third chamber lit up. Then a fourth.
“Normal,” pronounced the doc.
I realised how much air was in my lungs as they released to that word.
All the time, the thought was ever-present: what happens if it is something other than normal?
And then we found out. Dr Sorry got to the final measurement.
“Hmm,” he stroked his chin. “Let me get a second opinion on this one.”
My partner and I looked at each other as he left the room.
In came an older doctor, who introduced himself and quickly got to the business of rereading all the measurements, although with a slightly different style.
“Perfect,” he said as he went down the list of body parts. “Perfect, perfect, perfect.”
Before I could work out whether “perfect” was more appropriate that “normal”, Dr Perfect reached the imperfect, abnormal measurement. He explained that the measurement was just one of a handful of potential indicators of one particular disability this new person was at risk of: “You walked in with a one in 100 chance of the disability. Because of this, you walk out with the same chance of it.”
My partner and I each released a long breath.
We had thought long and hard about the prospects and consequences of creating a human with a disability. Not only did we choose to proceed despite the possibility of disability – part of the choice to proceed was because of the possibility.
Despite this, we were left with the sense that we should be afraid of anything outside the norm. I can only imagine the impact the doctors’ approach would have on parents who have not had direct experience with disability.
Right from these early beginnings of life, we are conditioned to pit normality against disability, and then to conflate disability with the need for sympathy.
People with disability do not need the medical profession’s sympathy. What we do need is their knowledge of the human body and an understanding of the value of diversity.
The starting point is one simple linguistic change during pregnancy: end the language of normal and start using the language of health.
In a few months, my partner and I hope to be proud parents of a new human being. They might be healthy. If they are not, we will need the health system to assist them to achieve their best lives.
If they have a disability, they will contribute to the great project of human diversity. That will be very normal indeed.
• Sam Drummond is a lawyer and disability advocate
