I grew up in the typical suburban town of Ellicott City, Maryland. At 15 I started getting interested in punk, but I only had one friend who was actually in a band. I listened to his shitty demo tape in my room all the time; eventually, he invited me to a show he was playing. It was at some old church that turned into a DIY venue on Fridays. I had read about these kinds of shows but never experienced them. Like a lot of kids, I’d only ever been to arena shows. The idea that you could on a show yourself-- that people would come-- seemed unreal.
My father dropped me off at the show. Standing outside, I took everything in. The people hanging outside the venue; the bands loading in. It felt different. Instantly I knew this was something I wanted to take part in. I didn’t really know anyone here and my friends were already inside. I could hear the band starting and made my way to the entrance. I looked up. I couldn’t get in. There were three flights of stairs.
I have Cerebral Palsy, or what is commonly referred to as CP. Simply put, CP is a kind of brain damage that can affect everything from walking to talking. It is believed that like many I developed CP at childbirth. Around age two or three, my parents and doctors noticed I wasn’t hitting certain milestones typical of my age, and after some testing I was diagnosed. I was extremely lucky-- it only affected my ability to walk, and certain motor skills. I used a walker at age four. Like many with a disability, I learned how to adjust to the world around, though there wasn’t really much “adjusting.” This disability was my world, and I’ve never known otherwise.
I went to a public school. I entered at a young age and was able to grow with my peers. For some, growing up with a disability might mean extreme loneliness or disconnect from your community. I’ve luckily never felt that way. I wasn’t active as most able-bodied children, but, for the most part, I never had to deal with being the “other” too much.
My father had a huge record collection and made sure I knew it. From age six he showed me everything from the Ramones to Yes. At eight, my father bought me my first real stereo, which could play records and had two cassette players so I could dub taps. I started making mixtapes.
I got into punk as a teenager, reading up and hanging out at my local record store. It felt like I was a part of something, but deep down I knew I wasn’t seeing the bigger picture. There were things I was missing. Most of my high school friends had no idea why I would spend lunch periods talking about Black Flag, Flipper, Huggy Bear or Merzbow. I would make tapes for friends, but no one really “got it.” Luckily, my one friend was in a punk band and made sure I knew about whatever they were doing-- especially their DIY shows.
At that church show it felt like there was nothing I could do. Those three flights seemed hopeless and everyone was in the venue but me. There were some punk kids outside, but I was too scared to ask them for help up the stairs. At that age, I felt embarrassed to ask for help. I didn’t want to burden other people. I saw outside and listened to most of my friend’s set. At one point I was sitting down outside and these two punk kids walked by, saying, “Whoa, a walker, what the fuck is that doing here?” I pretended to ignore them. As time went on, that became a sort of comment I’d have to deal with frequently. But at that moment I couldn’t bear to hear anymore. I walked to a payphone and called my dad to pick me up. I left early.
At first I was sad I couldn’t see my friend’s band. But that initial feeling of excitement about punk and DIY still resonated, and I knew I could figure out a way to be involved. Then and there I told myself, “If I can’t go to people, I’m going to get people to come to me.” I more intensively started learning about punk and DIY culture. I read about zines and labels that created a community. It was something I wanted and I knew if I could create something like that, I wouldn’t have to miss out on a lot of experiences.
At 18 I started my first webzine. It was more for myself-- a chance to interview bands I liked and meet people. The zine was called Hit-Dat (funny name for sure; I was listening to a lot of Public Enemy). I interviewed bands early on like the Dismemberment Plan and Splitsville. I met friends I still have today. It opened opportunities to go to shows I never could have experienced. It also became the gateway for me to start my own label. My first release was a split 7” between Baltimore’s Double Dagger and Eeconomist. The community I wanted was starting to form.
Soon I started booking shows at DIY venues in Baltimore with bands on my label; every venue had stairs. I tried to seek out accessible venues but there weren’t many. Charm City Art Space, a collectively-run DIY venue that exists to this day, was one of the few places. While they were all about inclusion, the venue was in a basement with a railing that wasn’t very sturdy. I dealt with it. If I had to book a non-accessible venue, I always had friends that would help me if need be. That’s what I told myself. But in the end, there was still a hurt there; it was painful to have to ask someone to help me, to have to give up their time for me. “This is my life,” I thought. “I just have to deal with it.” Since I had my own label and could book my shows, I felt like I was in control.
That’s not to say things were fine. Things were far from fine. Punk was supposed to be about outsiders, about being united by our differences. But it didn't always feel that way. I still would get people staring at shows. Often I would get into the venue and still not be able to see due to moshing or pushing or tight spaces. I felt afraid my walker would get in someone’s way-- my fear of being a burden. A lot of places didn’t have stages so it’s not like I could stand on the side somewhere. Sometimes when I would do merch and work for a friend’s band, people would play with my walker as if it was some toy. Sometimes I would speak up, and tell them it belonged to me, but other times I would just ignore it and let it go. Even when I would let comments go, inside it hurt. It was a reminder that I was different. I would hold back because I didn’t want to rock the boat. And I felt like I was the only one experiencing these issues. Because of my silence, it would almost feel like I was conforming to ableism in a way -- the idea that I wanted to become just like those who are abled bodied and almost deny my disability in the able-bodied environment around me.
A lot of people think that because I am out and doing things that I am some success story. Quite a few times at shows I’ve basically gotten a pat on the head from people I don’t know, saying things about “how great it is that I’m really putting myself out there” and “not giving a fuck what people think”. At first it felt good to hear those comments, but eventually I realized it hurt just as much as when people laughed about my walker. Even now, I sometimes still feel as though I’m treated like a child because of the disability; that I am pitied.
As I grow older I realize how lucky I am to have this community and to experience the good and the bad. I also realize that if I have the privilege to experience something different, I should at least try to speak out about the lack of discourse the DIY community is having about disability. When someone can’t physically get into a show, there is a feeling of rejection.
That the DIY community is so much about inclusion makes this confounding. I see all kinds of benefits; people speaking out about different forms of oppression. At first I thought my disability wasn’t a big deal, due to it not getting any sort of attention, but as time went on I realized that no one was saying anything because it wasn’t “their problem,” or maybe it was something they didn’t see.
It seems that people with disabilities aren’t taken seriously due to the fact that disability issues aren’t a hot button issue-- not only in the mainstream media, but in the DIY world as well. People might believe that since we have the Americans with Disabilities Act and other policies, that things are ok, but that is far from the case.
For most DIY venues, I know it is nearly impossible to make things optimally accessible. But there are other ways to work towards making spaces that are more inclusive of folks with disabilities. I’ve seen a few places with signs that say, “if you need help getting into the venue, ask the person at the door,” which is a good start-- though we must understand that asking for help is a big deal for many who have disabilities. Maybe next time you do that fundraiser for your venue, see if there are better railings you can install. If you are booking a show, on the flyer and Facebook invite, indicate whether the venue is accessible or not.
I understand that my experiences are shaped by my own perspective and privilege. Disability is a spectrum and everyone experiences disability and the oppression that comes with it differently. And to be real, I have barely skimmed the surface of my experiences with my disability and the DIY communities I have been involved with.
Disability silence goes far beyond just venues, and there is so much more to discuss. We need to look at our own DIY communities and start to speak out on what can be done not only for venues, but for inclusion in things such as workshops, record stores, etc. Music and art are inherently social and if we aren’t trying to include everyone, you hurt not only the disability community but every other community as well. My voice is one of many. It’s time to create serious dialog, because what happened to the fifteen-year-old me happens more often than you might think.