Getting a diagnosis: Confessions about my Quasimodo moment

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My sister has a disability and so I started young in the disability movement. And I was passionate and clear that our society devalues people with disabilities and that this causes more problems than disability itself.

I was fierce. I had no fear. I was quick to call bull when I saw it.

When I was 13 years old I was banned from my sister’s elementary school because “I threatened the teacher’s professionalism” by questioning how they treated her.

I was hauled into the principal’s office for calling out a teacher who had low expectations of what one of my friends was capable of.

I organized and spoke at conferences.

And when my son was born and he didn’t breathe and needed live saving treatment I was (relatively) calm.

They told us that he might not wake up. That the next 24 hours were crucial. They told us we might need to make some very difficult decisions.

When we were alone, my husband asked me, choked up and confused and despairing, “Is this it?” His question brought me right back to myself. “NO”  I answered. “This is NOT it.”

We mobilized. I did everything that I had learned during my life. I made sure that the medical staff knew that he was valued as a son, grandson, nephew, community member and brother. We communicated high expectations of his recovery to the staff and directly to him. We bent over back wards to ensure that everyone saw him as our much loved baby with a life of potential and many people who love him.

And it worked. Everyone around us (for the most part) stopped talking about making decisions about his death.

And he lived. And I understood he would have a disability and was ok with that.

But at some point after that they started to talk about the cause. It is kind of funny. It wasn’t until I was in my first year of university biology class that it ever occurred to me that there might be a cause for every intellectual disability. I had always assumed that the human condition existed along a continuum. It seemed self evident. Still does. But a couple of people suggested that my son might have a genetic condition and they wanted to look into it.

I have no memory of why I agreed to meet with genetics. Maybe I didn’t and it just happened. But the genetics people came in. And they looked at my precious, superhero, fighter of a son. And they picked apart his fragile, medically assaulted body. And they told me they were pretty sure that he had a particular syndrome.

The team of two suggested that we do genetic testing. I asked if there was any benefit to my son. Would his life be better if we had a diagnosis? Or could we just be mindful of possible health issues and monitor for those complications? They shrugged. I declined the test.

Knowing that I had a health care background, they gave me their diagnosis and a hand out for health care providers on the syndrome they were sure he had. I read it.

I was devastated.

My son was going to be…
cancer ridden
probably some other shit I can’t remember…

My son was going to be Quasimodo. Clearly he was destined to be rejected and live alone in a bell tower.

I called my mom. I was sobbing so hard when she answered the phone that she couldn’t understand what I was saying. When I finally composed myself sufficiently that she understood that the genetics docs thought my son had this condition her reply left me somewhat short in the way of sympathy. “Oh for god’s sake…Thank god. From the way you were going on I thought he was dying!”

I was unimpressed. She clearly didn’t understand the gravity of the situation.

It didn’t take long for me to calm down and realize that she did, of course, understand.

And I quickly figured out that the information that they gave me, the information that they were given in their training, was based on a time when most children with an intellectual disability were placed in institutions. Institutions are places where people are denied access to the good things in life. People don’t have access to even the most basic opportunities for personal growth. This tends to lead towards being short, malnourished, stupid and deformed. You can read more about institutional life here.

My point is this. I knew better. I knew better than to let negative terminology and low expectations about people’s potential to influence how I saw my son and his future.

And it still got to me.

And they were wrong. About everything.

Eventually there was a reason to do some genetic testing because we were debating treatment plans and one particular treatment could be harmful if my child had that particular syndrome. He didn’t have that syndrome. But that isn’t the point.

He is not Quasimodo and wouldn’t have been even if he did have that syndrome.

He has impairments. But it does not define his potential. He has a full life with friendships and team sports and adventures of all sorts.

My mom? I don’t even know if she remembers that moment. But I do. That moment when someone put me in my place and back on the right side of history and justice and…motherhood.

What happens to families when nobody guides you to the right place? Where there is no anchor and balance?

Is there an escape? Or do people live their lives with the self fulfilling prophecy that their kid is going to be short, fat, stupid and deformed?

How are our minds shaped by the way that other people talk about our children?

How does what we see as our son’s and daughter’s potential shape our expectations? Our vision for the future? How we treat them and teach them and support them?

What kinds of messages have you received about your son or daughter? How have those messages influenced you?

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Genia Stephen
Genia Stephen

Sister, mother, midwife, writer, speaker and perpetually curious. Dedicated to bringing you the voices, ideas and conversations of world class mentors and thought leaders in the field of disability.