Woman lifts up voices of disabled artists

BLACKSBURG, Va. – A Blacksburg woman has dedicated her life to uplifting the voices of disabled artists.

Her name is Dr. Elizabeth McLain, and she teaches disability studies and music history classes.

She is also a post-doctoral associate with the Academy of Transdisciplinary Studies and the Institute of Creativity Arts and Technology, as well as the co-director of Disabilities Studies Minor.

“I get to do a lot of research in my new position,” McLain said. “I work with artists with disabilities, just documenting their creative process and helping them think through things, talking them through life and documenting it. People who have intellectual and developmental disabilities, like blindness, deafness, mobility, and chronic health disabilities, [are] under the neuro-diversity umbrella. So a wide range. Some of them are doing visual works, sound design and creation. I have people that are doing things conceptually and thinking of art quite broadly.”

That passion has been in the works all of her life. McLain grew up in Alleghany County.

“I picked up the values my parents were giving me growing up, like work ethic,” she said. “There is a belief in the community of people looking out for each other, and then there is a streak of independence. I have inherited a lot of determination, which is great, but it is a stumbling block in a way.”

There is a reason why McLain wants to make a difference in the lives of people with disabilities.

“My disabilities, I have had my entire life, but I didn’t know,” she said. “A lot of times, it is about them worsening. I didn’t know I had autism until I was an adult. I had traits of it, but it didn’t strike me as unusual behavior until later.”

She also found out she has Ehlers-Danlos syndrome.

“It causes my joints to dislocate,” she said. “It impacts a lot of my body systems, and it was difficult to get that tracked.”

McLain made the discovery while doing the very thing she loved.

“I was a music major studying trumpet,” McLain said. “All of my family were brass instrument players, and I was the only one who wanted to make a career out of it. I was playing trumpet when my ribs started dislocating.”

She said it caused horrible pain, and unfortunately, she said doctors didn’t understand.

“Doctors weren’t sure what to make of it,” she said. “They thought it was my asthma that was hyper-inflated or something. It took several years to get them to know what was happening.”

Because of that delay, McLain found herself having to have emergency surgery.

“I got the autism diagnosis and went to Roanoke and had to have an emergency surgery and found out I had endometriosis and had a cyst rupture. I lost an ovary and fallopian tube,” McLain said.

“The whole time I was at Virginia Tech, I should have registered for services for students with disabilities,” she continued. “I was having issues with asthma and chronic health stuff [and] intense amount of pain after the shooting at Virginia Tech, which was my sophomore year. I had mental health stuff on top of that, had PTSD and wasn’t sleeping. I was in bad shape, but I didn’t want to register with the office because that felt like that was giving up.”

Eventually, after seeking guidance from and being challenged by some very important people in her life, she did get services and that opened her eyes to a world of trying to help others like her.

“Folks have been disabled in Appalachia for a long time, but we don’t see ourselves as an identity in the community. A big part of that is making sure any research that is done about us, is done with us,” she said.

While wearing many big hats professionally at Virginia Tech, over time, McLain has been involved in many projects helping those with disabilities on campuses.

For example, she’s been involved with the Student IDEA board when she was at the University of Michigan.

“It is for inclusion, diversity, equity and access,” she explained. “They did a survey for the students and found that they were routinely experiencing ableism but could point to very specific incidents that happened within the last 12 months. We were able to create a blueprint for how to improve the university — recruitment, helping people with job placement and alumni relations, opportunities for sports and recreation, and community building. It was pivotal to see this moment and how it is helping.”

She is very passionate about the Disability Alliance and Caucus, which she says formed between 2016 and 2017 at Virginia Tech.

“There have been very small periods of time that we have made a huge impact,” she said. “Really, the big picture is trying to make sure people with disabilities have equal access [and their] civil rights honored, [while also ensuring] that they find their community, and that the world knows about the culture.”

She also is a part of a group that started, ‘Open the Gates Gaming.’

“It is made up of researchers that are a part of some kind of marginalized community trying to make it in, and we are pushing the gates open from the inside, actively trying to keep gatekeeping,” she said. “This is something formed from the local community wanting something.”

That is where her love for Dungeons and Dragons comes into the picture.

“The games are based on storytelling,” she said. “You can be whoever you want to be and put on identities that would make the world different or see something from a different perspective. We got a little grant that helped us get the tools needed to make any game quicker and easier for people to understand and participate. We simplify it to make it better because it is a game where you can try to do anything. It grew in interest more than we thought, and then we had people writing adventures that were more inclusive. We want everyone to feel like a hero.”

She believes it is helpful in so many ways.

“That project is very exciting for me because you are building community and lasting friendships. A lot of people can feel isolated without a community if it is something they are ashamed of about themselves. And too often, we are excluded from the workplace, education and social events. Sometimes the only people we interact with are people who give us care, and it can be an odd relationship, so finding ways for people to form community is very important to me.”

Another exciting project McLain is involved with is working with a2ru’s award-winning online platform for arts-inclusive interdisciplinary research to life the voices of disabled artists through a digital archive called Recording CripTech.

“Resources out there are still a little thin. A lot of time we will have the product maybe and not the story. But now we will be able to have the story and be able to get into it a little bit more, helping them create an archive showing their creative process and showing not only how their minds work and how they navigate the world as an artist with a disability and whose art is informed by that unique perspective. But we will also see the obstacles they run into and how they circumvent them,” she said. “There are so many talented musicians with disabilities that we don’t know or recognize because they can’t access the industry, can’t even get on the stage to perform. Representation matters.”

McLain has won several awards on her journey to lifting the voices of people with disabilities. She has this clear message.

“Disability is not a tragedy,” McLain said. “It is a normal part of human experience. It is important to know we are not alone. There is a community waiting for you with culture and art and a whole range of human emotions just like anybody else.”