Week 12: Stevie Hopkins and the Heart

Last Thursday, I listened to a young man named Stevie Hopkins talk about growing up with Spinal Muscular Atrophy type 2.

Hopkins is a University of Illinois alumni who started a company called 3E Love with his sister Annie to change society's perception of disability. He began his lecture by recounting a story he heard in which an old woman was dying of cancer. In her last days, she just wished that she could have been seen as a grandmother, a mother, a sister, or a friend...instead of just another "old woman dying of cancer." This struck a chord with Hopkins, who understood what it was like to be reduced to a "disabled" person.

In 1984, not long after he was born, the head of a neurology department at a hospital told his mother that she should go home and pretend like nothing had happened. He told her that she should simply "stop feeding, stop caring, and stop loving" for her 15-month old son because he wasn't going to live past 2 years. Luckily, his parents were not as heartless as that doctor. Even when his little sister Annie was born with the same muscular atrophy condition, they never treated their children like disabled people. So, Hopkins did the best he could to live a normal childhood. And for the most part, it wasn't so bad. In fact, he recalls being "the most popular kid in elementary school" and playing tons of sports.

Aging brought about its own complications though. It's a complex time when we become more aware of sexuality, body image, race, gender and other major issues within ourselves and society. This, combined with the arrival of more medical issues, proved to be a difficult period in Hopkins' life. Suddenly, the same kids who had played with him in childhood were the ones throwing things at him, and calling him names. Depression ultimately came to replace the fun of his early years as puberty and high school took over. I can't even begin to imagine the psychological trauma of being stuck at home playing video games all day while others are out and about living life, relying on personal assistants, or watching people dance and moving about freely--things that most of us take for granted. All of that free time proved to be worthwhile for Hopkins though. Instead of writing one page book reports, he wrote 10. His studying paid off; he graduated valedictorian of his class, and was accepted into UofI for his undergrad studies.

"This school is like heaven for people with wheelchairs," Hopkins said. I had no idea. I thought handicap accessibility was just a no-brainer on college campuses, but clearly that hasn't always been the case. In fact, Annie, who also attended UofI, seems to have played a role in the building of ramps at many sorority houses.  Hopkins had a positive outlook on life as he began his freshman year. "We're all going to be equals. People are going to treat me differently," he thought. Of course, it wasn't that simple though. His dorm, known as Beckwith Hall during that time, grouped him together with others who had physical disabilities and diseases, some he had never even heard of. He was scared of his own surroundings.

On his first night, typical drunk students were leaving the bars around 2 am. There were some bushes near his window, which was open, and he remembers hearing rustling. Some guy was trying to urinate into the corner of Hopkins' room, and others outside began to laugh saying, "Haha, this is where all the retards live." That was the first time he had ever been called that in his life.

The 3E heart symbol is seen on the bag above.

Needless to say, his first semester wasn't the best. He had little money, got drunk a lot, fell in love with a lesbian...the list goes on. Eventually, he made some genuinely good friends and those with disabilities finally began to intermingle. Beckwith Hall had become a frat house for kids with wheelchairs. If they wanted to go out for dinner, they did. If they wanted to host a barcrawl, they did. Suddenly, everyone started forming romantic relationships too. "We were living the college dream," Hopkins said.

Of course, this "golden age" came to end at some point, and once again reality took over. Finding a job, heartbreak, lost friendships. However, this time Hopkins learned to finally embrace all of his challenges. With the aid of a graphic designer friend, his sister created what has become the symbol of the 3E Love movement. The image features the traditional handicapped symbol, but instead of a wheelchair a heart is the dominant form. The 3E slogan stands for "embrace diversity, educate your community, empower each other, and love life."

Unfortunately, I had to leave the lecture early before hearing more about Hopkins' work and the organization. After doing a little research though, I was a bit shocked to find out that his sister had passed away in 2009 at the age of 24. The work that Hopkins does now is a continuation of her legacy and message to "embrace diversity and live life to the fullest." I had actually thought that Annie was one of the girls in the front of the room while the lecture was being delivered. There were many other students in wheelchairs who had came to hear Hopkins speak though.

I suppose what stuck with me from hearing this talk was just seeing how personable and hilarious Hopkins was. We laughed at his humor, and felt the pain in his honesty. In fact, he was probably a better public speaker than most people I know. We're often guilty of dehumanizing people who have any sort of disability, or at least thinking we cannot relate to them. Or perhaps we find ourselves feeling very sorry for them...but it's not sympathy that they're looking for--it's equality.





            




http://www.3elove.com
http://www.mcdonoughvoice.com/article/20111110/NEWS/311109951