Ending stigma is an inside job

By Louise Kinross

Yesterday I was interviewed by someone who’s writing a paper about stigma.

I got to answer questions about what disability stigma is and how we might help eliminate it.

Years ago I came across this useful definition: Stigma is “the recognition of difference based on some distinguishing characteristic, or ‘mark’ and a consequent devaluing of the person...Stigmatized individuals are regarded as flawed, compromised and somehow less than fully human (Dovidio, Major and Crocker, 2000).” 

People who are “marked” in this way are the target of prejudice, avoidance and rejection.

Of course what causes a person to be “marked” depends on what’s valued in a culture.

Those messages—and their flip side, a negative bias towards those who don’t measure up—are passed down from generation to generation.

The values that drive stigma are no mystery. They are not somehow “out there,” generated by other obviously “less enlightened or sophisticated people.” They are in each of us. They are what we learned, often implicitly and before we could understand, about who matters and who doesn’t.

These values played out in the elementary school I went to, without a single child with a disability. Absence speaks volumes about who is welcome.

They were in our neighbourhood where, as a young girl, I watched a teen with Down syndrome being dropped off from a sheltered workshop in a station wagon. He was the older brother of two of my friends, and he ran, head down, into the house. Why did he run with his head down? I didn’t know, but I knew something wasn’t right, something wasn’t fair.

The researcher who was interviewing me about stigma recalled how in Grade 3, a child with a disability joined her class, and everyone made fun of him. More of those cultural values, talking loud and clear.

Recently some members of Holland Bloorview’s children’s advisory council were interviewed about their lives. “There’s not one day where I don’t sit at lunch alone, because nobody wants to sit with me,” said one teen, who uses a wheelchair. What does that say about which bodies are valued in our culture, and which aren’t?

In 2017, people with intellectual and physical disabilities are routinely denied transplants. Here’s one recent story in the Washington Post about a young man with autism who inherited a heart condition from his father. His father died from it, and he will too, without a transplant. As the reporter notes: “...mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.”

We all know about the North American pandemic plans that exclude people with intellectual and mobility disabilities from accessing a ventilator when there’s a scarcity. Can anyone say “value judgment?”

In 2012, a French psychologist published a study that showed that adults who say they accept children with disabilities carry, at an unconscious level, negative stereotypes about them.

In the study, published in the journal PLOS One, 165 adults were asked to rate photos of children with Down syndrome and photos of typical children. Participants then did implicit association tests, which capture the strength with which certain groups of people are automatically—without conscious awareness—associated with positive or negative attributes.

Participants included 55 young adult students, 55 adults and 55 caregivers who work with people with intellectual disabilities. In each group—including the caregivers—photos of children with Down syndrome were automatically associated with a negative trait. This was found in people who had openly rated the photos of children with Down syndrome positively.

“These implicit associations are the result of social values…carried by our culture,” says lead investigator Claire Eneau Drapeau. “These are likely deeply embedded, and difficult to break. Nobody is immune, even people who have contact with the stigmatized group.”

What this means is that each of us carries these negative ideas about people with disabilities—and other marginalized groups—in our minds. How do we free ourselves from them?

Only through awareness, “can we choose to try to change them, to struggle,” Drapeau says.

The first step is to look inside and do your own inventory. Go back and excavate these messages. Things you’d never say out loud, which aren’t politically correct, but which you learned through what you saw and heard as a child.

Say them now, out loud. Talk about them with your family, colleagues and friends. Some of these ideas, about how our worth is linked to what we do and produce, are no different than the ones the German Nazis used during World War II to justify the genocide of disabled children and adults. They called them “useless eaters.”

Before we adopted two of our children, my husband and I attended a workshop on interracial adoption. Part of it involved each parent listing, and talking about, the common stereotypes about the race of the child they were going to adopt. This was not a fun exercise, but it was a necessary one.

It struck me, during my conversation with the person researching disability stigma, that we don’t have to search outside ourselves to pinpoint or understand the prejudice associated with disability.

We don’t have to conduct elaborate research studies asking disabled people to tell us about the discrimination they face—as if we had no idea (and as if negative ideas about disability were foreign to us). 

The social values that fuel disability stigma are in each of us. Until we examine these ideas in our minds, how can we see how they influence us and break out of them? Expanding our concept of human value, beauty and diversity is not a passive act. It requires mental work.

And let’s not forget that stigma exists within the disability community itself, in countless ways in which certain kinds of disabilities are favoured over others. 

In the award-winning book Far From The Tree, Andrew Solomon writes about parents raising children so different from themselves they can appear alien: children with a variety of disabilities, musical prodigies, transgender children and children conceived in rape.

Ironically, while these groups all face stigma, during the writing of the book, their families attempted to distance themselves from each other.

The parents of child prodigies, Solomon writes, didn’t want to be included in a book with families of severely-disabled children. People with autism insisted that those with Down syndrome had lower intelligence than them. Deaf people didn’t want to be associated with people with schizophrenia.

So again, these cultural ideas are present in our minds. Examining them honestly, and taking up “the struggle” that the French researcher described to chip away at them, is a choice.

So too, is continuing to operate on negative biases we hold at an automatic, unconscious level.