Maine’s Deaf community was desperately grasping for information in the wake of Maine’s deadliest mass shooting.

“We were texting each other, FaceTiming, trying to find loved ones and colleagues. But there was no information. No access,” said Karen Hopkins, executive director of the Maine Educational Center for the Deaf and Hard of Hearing/Governor Baxter School for the Deaf.

A man had walked into Schemengees Bar & Grille in Lewiston, where a group of deaf and hard of hearing friends had gathered for a cornhole tournament. Four deaf people were killed, and five others were among the injured.

By the end of the night on Oct. 25, Robert Card had killed 18 people and injured 13. Two days later, he was found dead of a self-inflicted gunshot wound.

Hopkins, who is deaf, learned about the shootings via text message. As a known leader in the community, she was bombarded with messages from people who hoped she could shed some light on the situation: who was there, who was safe and accounted for, who was not.

She couldn’t.

Information was sparse in the immediate aftermath of the shootings at Schmengees and Just-In-Time Recreation. But the situation was especially desperate for Maine’s Deaf and hard of hearing community. For hours, American Sign Language interpreters were kept out of hospitals, unable to help deaf victims communicate with health care providers or help deaf family members access information.

Maine State Police gathered at City Hall to hold the first news conference just before midnight. There were no interpreters and no captions on the livestreams.

While hearing residents learned that Card was still at large and that the state had implemented shelter-in-place orders for Androscoggin County and parts of Sagadahoc County, the Deaf community had no direct information about the manhunt, those who were killed or injured, or what they should do to stay safe. They were forced to rely on social media, where misinformation ran rampant.

“It was hard to see inaccuracies shared,” Hopkins said. “I was trying to get accurate information and get that accurate information out to the community.”

Interpreters dropped everything to go to news conferences and hospitals and help families communicate with law enforcement, medical professionals and others. Community leaders demanded the Deaf community be given access.

Change came quickly, but it wasn’t smooth.

The state police brought in ASL interpreter Regan Thibodeau to translate a news conference the next afternoon, but she was cut out of video frames, rendering her signing useless to those watching on their computers or TVs.

By the time the third news conference was held, Department of Public Safety Commissioner Michael Sauschuck was taking intentional steps to remind videographers to maintain access for deaf and hard of hearing people.

“For the consideration of the four deaf victims and their families, we are requesting that the ASL interpreter is in all frames for language access here in Maine and the U.S.,” Sauschuck said at the news conference on Oct. 26, and each one thereafter. “They are grieving and have the right to know the latest information in ASL.”

The increased access was a significant improvement. But roadblocks remained.

BITS AND PIECES OF INFORMATION

Deaf and hard of hearing people, including Elizabeth Seal, were forced to rely on writing and passing notes and video interpreters rather than in-person translators to receive traumatic and personal information.

Elizabeth Seal’s husband, Joshua, was shot and killed at Schemengees. He had been there playing cornhole. Soon after the shooting, Elizabeth Seal found out from friends that he had been seen crawling across the floor of the bar and that he had made it into an ambulance. The next piece of information she received was at the reunification center at Auburn Middle School. Someone wrote her a note saying she should prepare for the worst.

When communicating with law enforcement and others following the shooting, she had to use a video relay service to sign with an interpreter over the phone.

Video relay is a less-than-ideal form of communication, members of the Deaf community say.

Like all technology, it can be glitchy, especially when Wi-Fi doesn’t work perfectly. Signers from different regions sometimes sign in different ways, which can lead to communication challenges. It’s also impersonal. Signers translating over video can’t see or feel the context of the space someone is in, making it particularly ill-suited for the delivery of challenging and traumatic information.

Relying on this suboptimal form of communication was due largely to the lack of a sufficient plan for sharing information with deaf and hard of hearing people during an emergency, and the fact that Maine’s interpreter community is small and the need was large, said Thomas Minch, a deaf services advocate at Disability Rights Maine.

Without a communication plan in place, Maine’s Deaf community was left with the burden of figuring out how to get information to their members, Minch said, piecing together the best response they could while dealing with an enormous amount of trauma and pain.

It’s crucial to provide not just access to information, but quality access, and for the hearing community to give that access, not wait on deaf and hard of hearing people to ask for it, he said.

The initial failure by the state, the media and Central Maine Medical Center to provide Maine’s Deaf community with appropriate access to information about the statewide emergency and the following scarcity of quality communication methods highlighted what is a consistent lack of equity and access for deaf and hard of hearing people.

Leaders of the state and the nation’s Deaf communities said they are often forgotten, ignored and forced to fight for basic information.

But being sidelined in this situation, they said, was particularly frustrating, demoralizing and scary because the Deaf community was so profoundly and intimately impacted.

“Most everybody in the Deaf community had some connection to those who passed,” Hopkins said. “It is such a tightknit and close community, it’s like a family. Everybody is feeling the loss.”

Central Maine Medical Center did not respond to multiple emails and voicemails requesting an interview about its policies and protocols regarding interpreters and the hours following the shooting.

‘THERE HAS TO BE CHANGE’

Now the Deaf community is renewing its fight for equal access to information.

“There has to be change,” Hopkins said. “There has to be reform.”

Around 6.1% of the world’s population, or 466 million people, have a disabling hearing loss, according to the World Health Organization.

Around 12 million individuals in the United States, including around 70,000 Mainers, consider themselves deaf or significantly hard of hearing, according to the United States Census’ 2021 American Community Survey. That’s 3.6% of all U.S. residents and 5.1% of Mainers.

In the wake of the shooting, Hopkins and other leaders in Maine’s Deaf community received an outpouring of support from across the world. Hopkins received text messages and emails offering funds, staff and other support to help the community heal and advocate for change.

The global Deaf community has been amazing since the shooting, Hopkins said. “Deaf communities around the world are feeling the pain of not having access,” she said.

There are laws, such as the Americans with Disabilities Act, that protect deaf people’s rights to communication. But there is widespread noncompliance, and deaf people are often left behind and do not receive the information that hearing people receive, said Howard A. Rosenblum, CEO of the National Association of the Deaf.

“It is only until after something happens that people realize something has to change,” Rosenblum said.

He said that is unacceptable. Deaf people should not be an afterthought, and people should work proactively to develop communication access protocols, he said.

SELF-ADVOCACY

Deaf people in the United States communicate through American Sign Language. ASL is often misunderstood to be a literal translation of spoken English. However, it is a unique language entirely separate from English. While English is an auditory language, ASL is three-dimensional. It has its own grammar, syntax and culture, all of which are unique from English grammar, syntax and culture.

Many deaf and hard of hearing people in the United States are bilingual; ASL is their first language and English is their second.

Though information is often provided to deaf people through English captions, experts in ASL say that while captions provide some access, they are not sufficient, especially in emergency situations.

Deaf people should be provided information in their first language, said Sandra Wood, a professor of linguistics and the ASL program coordinator at the University of Southern Maine.

As a deaf person, Wood knows how hard it is to go without access to information.

Starting at age 6, Wood attended her local public school in Indiana, where she grew up.

She didn’t have an interpreter or a note-taker. She sat in the front row of every class and read the lips of her professors. When she couldn’t understand what was going on, she read her textbooks instead. Sometimes teachers complained that she wasn’t paying attention. She fought and explained she couldn’t understand what was going on.

“I did a lot of self-discovery and self-advocacy, even as a small child,” she said.

Wood went on to earn a bachelor’s degree in linguistics and psychology from Purdue University and then a Ph.D. in linguistics from the University of Connecticut. She studies syntactic structure of American Sign Language, comparative syntax of spoken and signed languages, acquisition of signed languages, and signing systems.

FIGHTING FOR ACCESS

Over the years, as she pursued her passion for language, she also has had to advocate for herself and her community.

“As a minority professor, I am expected to do more work to prove myself,” she said. “As a minority professor, I am expected to provide access, advocate for my community and be the face of the community.”

“I just want to study linguistics, but instead I have to constantly ask to be valued and for access that should be a given.” 

Access for deaf and hard of hearing people has significantly improved since the 1970s, when Wood was attending school in Indiana, but when that access comes to a halt during crucial moments like the Lewiston shooting, it shows that there is still work to be done.

Since the shooting, leaders of the Deaf community have had meetings with White House officials, Gov. Janet Mills, and Maine Department of Health and Human Services Commissioner Jeanne Lambrew. Members of the state’s Deaf community also hope to speak with the Federal Communications Commission, which regulates interstate and international communications.

Minch, who attended the meeting with Mills and has been in contact with other members of federal and state government, said he is hopeful that the Deaf and hard of hearing community can work with government agencies and officials to ensure compliance with the Americans with Disabilities Act, that quality communication can be more accessible to deaf people, and that barriers can be removed.

“Equal communication access should just be a given,” Minch said. “There is no way to talk your way out of it. This is our opportunity to bring attention to communication access issues.”

Mills said she is committed to supporting increased access for the Deaf community. She said DHHS has expanded its support for ASL interpreter services, is drafting guidance for hospitals about interpreter access, and is working with other state departments to increase access to mental health practitioners fluent in ASL.

“I recognize the deep anguish and pain the Deaf and hard of hearing community is feeling right now,” Mills said in a statement. “In the face of this tragedy, their strength and resilience – born from years of living in a society that has not adequately included them – is inspiring. That inspiration should lead to action. We can, we should, and we must learn from the difficulties they face – not only when it comes to the tragedy in Lewiston but in their everyday lives as well – to find opportunities to improve in the future.

“I pledge that my administration is committed to working side by side with them to consider what more can be done to ensure they are fully recognized and included in our state, like every other person.”

Members of the Deaf community are hopeful that this moment will lead to change – but are frustrated that it took a disaster in their community for people to recognize they deserve access to information.

“It shouldn’t take a crisis like this to be seen,” Wood said.

“Our society needs to redesign its infrastructure in a mindful way to give access to those who speak visual languages,” she added. “What makes us disabled is not that we don’t hear. It’s the barriers that exist.”

Staff Writer Penelope Overton contributed to this story. 

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