Shifting the Perception of Disabilities

 

“Disability is not a bad word,” says Poppy Jean Sundquist, 47, who has cerebral palsy and hearing loss. “It’s the only minority [demographic] that anyone can become a part of at any point.”

An activist and volunteer, Sundquist works as a teaching assistant for Saint Paul Public Schools. Declaring that “representation matters,” she identifies as a queer, nonbinary person and a Korean American adoptee. First and foremost, however, Sundquist identifies as a disabled person.

Sundquist also is board co-chair of The Arc, which is a statewide disabilities support agency best known in the Twin Cities for its three Arc’s Value Village thrift stores.

The Arc has put disabled people and their families “at the forefront of decision-making,” says Anne Redetzke, 48, a licensed social worker for The Arc’s mid-state region. Earlier in her now 30-year career, Redetzke would be in meetings with disabled people and “everybody would talk over them, speak for them, make their decisions.”

Such disrespect can manifest as harmful assumptions, says Sundquist. She defines ableism as the tendency to buy into a system of biases, amplified by lack of education and exposure in able-bodied people.

Able-bodied people see someone with an obvious disability and “assume their cognition, their intelligence, is affected,” she says. Or they “rush” to help without considering whether the disabled person has less visible issues, such as sensitivity to touch. “It’s better and safer for everyone,” Sundquist says, “to wait for the person to state what they need.”

Sundquist personifies the contemporary and growing independence and agency of disabled people in determining how they conduct their lives. From where they live and work, to what types of support they want and need, disabled people like Sundquist are shifting how society perceives them.

Becoming Seen and Heard

Julie Johnson is president and CEO of MSS, formerly known as Midwest Special Services. She has worked in disability services for 34 years.

“We’ve pivoted in the industry to person-centered services,” Johnson says. “Not only what’s important for them, but what’s important to them. ‘What are your hopes and dreams? And how can you get there?’”

Each year, MSS supports and serves more than 500 people with intellectual and developmental disabilities at its six Twin Cities locations. When Johnson, 56, began her career as a MSS receptionist at age 22, it was “a wonderful, well-meaning organization,” she says, that sought to keep disabled people safe. Now MSS, which celebrated its 75th anniversary in July, has higher aspirations — focusing on what Johnson calls “meaningful” employment; in-person or remote services to develop self-care, self-advocacy, and communication skills; and working with disabled people to express their creativity through the arts.

MSS has a sculpture garden on its Saint Paul campus with artwork created by clients. Its Fresh Eye Arts & Gallery program showcases and sells artwork created by disabled people. Johnson’s next dream is a “really robust” entrepreneurial program for MSS clients.

“We were taught not to see the disability, to ignore it,” says Johnson. “What we’ve learned is, people are people, and we’re all different. Each one brings different perspectives and values.”

Disability Justice

At age 30, Reanna Milbrett is relatively new in the disabilities field. She is a licensed social worker in The Arc Minnesota’s southwest region, and brings to the field a contemporary focus on language. Asked how she defines disability, Milbrett is direct. “That is a loaded question,” she says. “I think it means something different for everyone, and that’s what we lean into at The Arc — embracing differences.”

Founded more than 70 years ago, The Arc now operates “under a set of principles that disabled folks created,” Milbrett explains. It’s called Disability Justice, a term coined (and capitalized) in 2005 by queer, disabled women in the San Francisco Bay area.

The term has been amplified recently by the performance project Sins Invalid, which lays out 10 Disability Justice principles. The Arc has translated those principles into “plain language definitions,” to be used for general understanding. They include:

Intersectionality, acknowledging a disabled person’s race, gender expression, and more.

Sustainability, advocating for energy, drive, and patience toward making real change.

Interdependence, arguing that people with disabilities deserve the freedom to choose options for how they get support, beyond what the government offers.

“For years we talked about how to support people with disabilities, and maybe we weren’t taking into account all those other aspects of their lives,” MSS’s Johnson says. “Like everything, it’s education. You stop and say, ‘Wow, I didn’t think about that.’”

To review the civil rights history of people with developmental disabilities, in housing, education, voting rights, and more, see the Minnesota Governor’s Council on Developmental Disabilities project “An Unfinished Journey.”

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