The hell and hope of FASD

A Winnipeg man approached a young sex worker he knew and made a proposition that would make some cash. If the sex worker could find and deliver him a three-year-old, he would pay her $400.

A Winnipeg man approached a young sex worker he knew and made a proposition that would make some cash.

If the sex worker could find and deliver him a three-year-old, he would pay her $400.

The young woman, whose moral and cognitive abilities are capped by Fetal Alcohol Spectrum Disorder, thought it was a great deal.

But before she went baby snatching for a pedophile, she spoke to Brenda Bennett.

Bennett is a cross between a social worker and an entrepreneur.

Five years ago, she started Life’s Journey Inc. with one partner.

It’s now a $10.5 million network of social assistance, housing and treatment centres for people with FASD in the Manitoba capital.

Bennett sat down with the sex worker and helped her process the situation. She asked what the deal would mean to her.

“Man, it would be a lot of rock,” said the sex worker, who is addicted to crack cocaine.

Bennett reminded the sex worker of the abuse she had experienced as a child.

“Wouldn’t that be the same as all the people who had sex with you?” asked Bennett.

The sex worker stopped and thought about it.

“Man, that would be wrong,” she said.

That’s all it took. Just a simple person-to-person chat prevented a major crime and tragedy from taking place.

Yet every day, people with FASD are treated as if they’ve made reasoned, calculated thoughts behind every impulsive thing they do.

Bennett has a litany of stories just like this.

Tragic, surreal and heartbreaking, her anecdotes highlighted the need for a major policy overhaul on FASD when she spoke at the public session of this week’s Walking Together conference at the High Country Inn.

“This will be our little fireside chat,” said Bennett, as attendees packed the room.

Her Powerpoint presentation, filled with numbers and academic terms, quickly took second stage to her tales at the frontlines of Winnipeg’s FASD epidemic.

A young First Nations man who grew up in foster homes once stole a van and drove back to Ontario to find his birth family. He was arrested by police, who didn’t treat him any differently than other perps they picked up.

He soon made friends with other aboriginals in jail. It was breaking the loneliness he had long suffered. They initiated him into their gang, the Indian Posse, which included a tattoo on his hands.

When he got back to Winnipeg, some new guys drew an interest in him. But the politics of gang warfare were beyond the man’s understanding.

One night, his new friends, who were members of the Gangsta Boys, drenched his hand in gasoline and burned it.

People with FASD fall through the cracks. They can’t learn in normal school settings because things like florescent lights and movement destroy their focus. They become stigmatized for being lazy or weird, and might drop out to escape the pressure.

And when they fall through the cracks, they end up in vulnerable situations where much more cognitively abled people use them like tools.

People often misunderstand their actions, attributing a normal person’s rationality to them.

One woman Bennett knows was caught smashing her pregnant belly into a wall.

People around her all thought the obvious – she was trying to abort the baby.

But after talking with the woman, it became clear she didn’t even know she was pregnant. She just had a big belly and she wanted to get rid of it.

There was also the person who could work two shifts a week at a restaurant and was doing well.

So well that their boss gave them a few more shifts, which quickly became too much.

But instead of requesting fewer hours, they cut their finger every few shifts for weeks.

They just couldn’t reason their way out of a workload that was too heavy.

Bennett also told tales of sex workers with AIDS, who don’t understand the connection between sex and sexually transmitted illnesses, showing that leaving people with FASD to their own devices will hurt the community at large.

And there was also the young man who felt genuine fear and remorse when he was told he breached his probation. He simply had no idea he had to be home by 7 p.m. beyond the first day of his sentence.

The cognitive limits of FASD last a lifetime. And thus the treatment is expensive and complex.

As Bennett says, no two people with FASD are the same. They need social workers and community support that knows their limits to a tee.

The common adage about buying a man a fish for a day or teaching him to fish doesn’t apply for FASD.

“For someone with FASD, you have to teach them to fish every day,” said Bennett.

Research clearly demonstrates the normal expectations of the education system, the typical workload in most labour markets and the theories on human conduct embedded in the justice system simply don’t fit for people with FASD.

There are numerous impediments ensuring slow accommodation.

There’s the tab, which is commonly said to be $1 million per person with FASD. There’s also the fact that the research is still relatively new.

But the disorder has its own unique roadblocks.

The moral dimension of FASD makes it unlike any other disability.

A mother made a choice to drink while pregnant.

People are quick to tie that decision into their opinions of the child and, as a result, into their opinion of whether someone with FASD requires expensive treatment on the social tab.

“They thinks it’s a choice,” said Bennett.

Because of the guilty verdict we see hanging over someone with FASD, most of us don’t defend their needs with the same principled vigour as we do for people with other disabilities.

But someone with FASD didn’t make a choice to have it and can’t make a choice to escape it – something nobody disputes when it comes to Down syndrome, autism or other intellectual disabilities.

Besides accommodating these individuals, advocates must change the hardened stereotype that people with FASD are destined to live failed lives.

The typical image of someone with FASD usually includes a broken and destructive lifestyle. Most people have concluded people with FASD are destined to living useless, dangerous and unproductive lives.

But a person with FASD can work in a normal office environment with a few changes. They can raise loving families. They can produce artistic works and socialize normally with others. They just have cognitive limits we can’t see and, thus, force them to overcome.

But if we tweaked office and learning spaces, and provided engaged support, we’d be giving them a chance to play a role in the world. Their skills, intelligence and passions would emerge, and a new more nuanced public image would appear.

FASD wouldn’t make you a failure, it would make you different. It would go a long way to taming the shame that people with FASD often feel about their plight.

Myles Himmelreich, 33, found his place in society despite having Fetal Alcohol Effects (FAE), one of the afflictions on the FASD spectrum.

He rose to the podium on Wednesday, the last day of the conference, and looked like any normal person.

Handsome, articulate and wearing a slick dark suit, he just looked like a public speaker, meant to inspire confidence and captivate an audience.

But every step of his life, he’s had to deal with his limits. Himmelreich’s disability went unrecoognized.

From the inside, it’s not easy to say you can’t do the homework or the job.

“I was a lot easier to just say I was lazy and didn’t care to tell them I couldn’t do it,” said Himmelreich.

He only got as a far as Grade 11 before he dropped out, fell in with the wrong crowd, and became addicted to booze.

Years of loneliness and destruction ensued, before he was asked to speak at a conference on FASD. Nervous, he took up the offer

“Right then, I found what I was meant to do,” said Himmelreich.

Before his speech, he put small hearts and plastic money on the conference room tables. The crowd raised the hearts if they had experienced one of the struggles in Himmelreich’s life – alcoholism, loneliness, homelessness, poverty or not feeling smart.

The symbolic piles of money were being returned for the price he’s cost society now that he’s found a meaningful role in society.

“I’m paying you back,” said Himmelreich.

“And I’m here to tell you, that as someone with FASD, I’m worth every penny.”

Contact James Munson at

jamesm@yukon-news.com

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