By Josh Sisson

In honor of Disability Pride Month

People discover their Disability Pride in some unlikely places. For Steve Foelsch, Director of Disability Studies at Starkloff Disability Institute, it was a dive bar in Bevo Mill.

“A bunch of us would get together on Friday’s for happy hour at Lemmons. Most of my friends had good-paying jobs, but I wasn’t working so they would never let me pay,” Steve recalls. “The first time I had a paycheck from SDI, I took a $100 bill down there and said the drinks were on me. To me, it meant more than just paying people back. It felt like equality. I felt like one of the guys again.”

Prior to the motorcycle accident that rendered him quadriplegic in 1985, Steve always had been part of the gang. He was prepared to join the 82^nd Airborne Division before a heart valve defect brought his brief Army career to an end.

Jobs were scarce, but he helped out in his dad’s shop and took whatever work came along. He enjoyed camping and float trips. He loved listening to music and playing guitar. He and his buddies even formed a punk rock band, a noisy outfit known as the Proud Young Men.

“I wouldn’t call what I did singing, because I couldn’t carry a tune in a wheelbarrow,” Steve jokes. “But someone once said I was the front man, and I guess that’s a good way to describe it.”

Coincidentally, Steve was on his way home from a punk rock show in Lawrence, Kansas when his life took a painfully dramatic turn. Disoriented by an unexpected construction zone and confusing signage, he found himself speeding down the highway in the wrong direction.

By the time he saw the rapidly approaching car, it was too late. Steve’s motorcycle and the oncoming vehicle collided head-on at 70 mph, launching Steve through the car’s windshield and roof before depositing him on the road.

The other motorist climbed out of her automobile to scream at Steve, evidently more perturbed by the shards of glass in her shoes than the man bleeding on the pavement at her feet. The impact might have pulverized Steve’s C4 and C5 vertebrae, but his sardonic sense of humor was still intact.

“All my life I’ve had some old biddy shaking her geriatric finger at me, telling me I’m going to hell or whatever,” Steve recalls. “I thought to myself, ‘Well, I guess one of them is finally right. I’m definitely dying tonight.’ I just had to laugh.”

Steve was wrong; he survived, at least from a clinical standpoint. Spiritually, though, he sustained damage that seemed irreparable.

“When you acquire a disability, you go through a mourning process because the person you were has died in a way,” Steve somberly reflects. “I was always a blue-collar laborer. I loved repelling, caving and riding my bike. But those were all things I suddenly couldn’t do.”

For three years Steve languished in the back room of his parents’ house, taking a few community college classes but mostly just drowning his sorrows. St. Louis in the mid-1980s wasn’t particularly amenable to wheelchair users — there was no motorized wheelchair, no accessible van. Steve remembers it as the bleakest period of his life, but eventually he realized he had to make a choice.

He could continue wallowing in his misery, dragging his loved ones down with him, or he could take a proactive step toward independence and redemption.

He enrolled at the University of Missouri-Columbia as a student of its renowned journalism school and a patient at Rusk Rehabilitation Hospital, a recognized leader in the treatment of traumatic injuries. Steve didn’t stick with journalism, eventually earning bachelor’s degrees in history and anthropology, but Rusk helped him regain control of his life.

Steve suddenly had access to the best physical and occupational therapists. He received all of the adaptive equipment he needed and was finally able to direct his own level of care. Most importantly, he tasted true freedom for the first time since before his accident.

Steve found Columbia to be far more wheelchair friendly, so he had no problem accessing his favorite shopping destinations and watering holes. Steve’s gregarious nature and rebellious streak soon reemerged, vanquishing the depression and fear he experienced in the aftermath of his accident.

“My folks drove me up to my apartment in Columbia, and my roommate hadn’t gotten there yet. When they left and the door closed I thought, ‘What if my attendant doesn’t come in the morning? I could be stuck here by myself for a few days.’ I remember crying into my pillow. It was a scary, emotional time,” Steve recounts. “That was on Sunday night. By Friday, I was getting a ticket for being drunk in a park after hours, so in just four or five days I was pretty acclimated.”

The more Steve ventured out, the more comfortable he became in social settings. He used humor as a means of initiating conversation, and he found most people to be friendly and helpful. But Steve also learned the importance of being clear about how much assistance he actually wanted.

“When somebody holds a beer bottle up for me to drink, it makes me feel like a goat in a petting zoo,” Steve remarks. “I’d much rather hold the bottle with my mouth, or I can set it on my lap board and use a straw.”

As much fun as he was having in his return to the social scene, Steve hadn’t fully come to terms with this new version of himself. He wasn’t ashamed of his disability, but he was less than enthusiastic about identifying with the Disability Community.

“I didn’t want anything to do with disability or other disabled people. I couldn’t stand Group Therapy sessions. I didn’t want to hear your sad story, and I didn’t want to tell my sad story,” Steve recollects. “I didn’t want to listen to your emotions, and I certainly didn’t want to deal with my own.”

Inevitably, Steve paid a price for his lack of Disability Rights knowledge and reluctance to take ownership.

“I accepted a lot of discrimination,” Steve admits. “I never considered going up to the proprietor of a place and saying, ‘Hey, you really need to install a ramp in this doorway.’ I just thought, ‘Fuck you. If you don’t want my business, then I won’t give you my business.’”

Steve met similar resistance in his quest for employment. In addition to his undergraduate degrees, he earned a Master’s in Education and returned to his hometown to begin his quest of becoming a teacher. He applied to high schools all across St. Louis, eliciting the same disappointing response every time.

“I look pretty good on a resume, but as soon as I would ask where the wheelchair ramp is, they’re like, ‘Um … we’ll get back to you,’” Steve laments. “I would come home to four or five messages from principals wanting to know when I can start, but when they find out I’m in a wheelchair, the phone calls stop and they don’t follow through. I knew what they were doing was wrong, that there was a law [the ADA] that made discrimination illegal, but I figured if you don’t want me, then I don’t want to work for you anyway.”

Remarkably, when SDI Founder Colleen Starkloff contacted him about a possible job with the organization in late 2004, Steve’s aversion to all things disability prevented him from returning her call at first.

“Colleen presents me with this opportunity, and she’s talking about developing a Disability Studies program at Maryville University,” Steve remembers. “And here I am, looking for a job in education, but I don’t call her back right away because I don’t want anything to do with disability. I don’t want disability to have any influence on my future.”

Fortunately, Colleen didn’t give up so easily. She paid Steve a visit, leaving him with literature from some of the strongest voices in Disability Rights advocacy. Steve began reading, and the experience was transformative.

“These books were written by people with significant disabilities, but they made it an economic and political issue rather than a matter of charity or pity,” Steve explains. “I thought to myself, ‘Wow! I could really get behind this. This is revolutionary.’”

Steve concludes: “I only saw the medical model of disability before, and I knew I wanted nothing to do with that. This was the first time I understood that demanding equal access is not the same as asking for special treatment. I’m a citizen like everyone else, and I’m entitled to the same access.”