As a disabled person, my relationship with the queer community at large has been fraught with cultural<\/a> and access barriers<\/a>. These spaces may be safer for my queer identity, but only if I\u2019m able to divorce it from my race and ethnicity or my disabilities. COVID-19 exemplified this perfectly, as many queer spaces casually \u201creturned back to normal,\u201d excluding disabled queers who might be at a greater risk of dying from the virus should they be infected.<\/p>\n\n\n\n Over the last few years as I\u2019ve connected with disabled community, I\u2019ve seen networks of queers with shared disabilities find and support one another. But as well connected to the queer disability community as I\u2019ve become, I still struggle to find other LGBTQ2S+ people with spina bifida. SB is the most common \u201cbirth defect<\/a>\u201d in Canada, yet it was only after writing a widely shared article<\/a> in which I mentioned my diagnosis that I started to meet other SB folks virtually. <\/p>\n\n\n\n October is Spina Bifida Awareness Month. This year, I knew I wanted to bring attention to the fact that SB exists in the queer community\u2014and to give people with SB the visibility to find one another and build our own community. So, I spoke with queer SBers from across North America about their journey finding their queer identity, representation and the importance of community. <\/p>\n\n\n\n For much of my life, I struggled with internalized ableism and distanced myself from my spina bifida as much as I could. I felt that my queerness was easier for others around me to accept than my disability was, and I didn\u2019t want to be seen as a burden.<\/p>\n\n\n\n But others I\u2019ve met said they experienced the opposite.<\/p>\n\n\n\n \u201cMy disability was something that was always first in my life,\u201d says Andrea Lausell<\/a>, a Los Angeles-based Latinx digital creator I met online in 2019. \u201cI think I learned how to say lipomyelomeningocele before I said I\u2019m a boricua<\/em> (a person from Puerto Rico).\u201d <\/p>\n\n\n\n For Lausell, identifying as disabled was about safety\u2014to get accommodations or to have her limitations taken seriously. But her focus on disability and having to advocate for her own needs also meant she didn\u2019t have a chance to explore her queerness. <\/p>\n\n\n\n As Baltimore-based visual artist and disability advocate Celeste Tooth<\/a> noted, stereotypes around disability and medical trauma play a huge role in that. <\/p>\n\n\n\n \u201cI think everyone who is queer\u2014especially growing up in a conservative area\u2014struggles with identifying [their sexuality] without [also] being told that you\u2019re a desexualized being because you\u2019re disabled.\u201d Tooth described how their earliest experiences of having their body touched were in medical contexts, dissociating it from sexuality in their mind.<\/p>\n\n\n\n Syd Chasteen<\/a>, a demisexual and agender disability blogger from Southern Indiana, agrees, saying they found it complicated to untangle their personal identities from that desexualization and to move past \u201call those \u2018truths\u2019 that we grew up with: that your dating pool is nonexistent; you aren\u2019t a sexual being; you don\u2019t have a gender. You\u2019re just disabled.\u201d<\/p>\n\n\n\n Understanding your identity becomes more complicated when you straddle multiple communities. It\u2019s all the more isolating when the communities that are supposed to embrace you further marginalize you instead. <\/p>\n\n\n\n \u201cIn the queer community, we\u2019re supposed to be all about accepting differences \u2026 and celebrating things that are not really celebrated in the mainstream,\u201d said Tooth. \u201cBut then when it [comes to] disabled queer people trying to be part of the larger queer community, I feel like the community sometimes just mimics society at large.\u201d <\/p>\n\n\n\n Just disclosing your disability can shrink the number of connections you can make. \u201cThat part weeds out 50 percent, let\u2019s say, of the people that I run into in queer spaces,\u201d says Keith Sadler<\/a>, a Kansas City-based writer. <\/p>\n\n\n\n When it comes to dating, Sadler says that in his experience, non-disabled people may be reluctant to start dating a disabled partner\u2014or may quickly become overwhelmed once they get a closer look at the barriers we have to navigate in our daily lives.<\/p>\n\n\n\n At the same time, mainstream disability communities can feel just as oppressive. Since spina bifida is a congenital condition, SBers start receiving pressure to conform from birth. \u201cSo much emphasis is placed on prevention and babies and helping little kids be more \u2018normal,\u2019\u201d says Chasteen. That becomes a community-wide pressure to be the most palatable and acceptable kind of disabled person possible. <\/p>\n\n\n\n Lausell, whose spina bifida developed because her father was exposed to Agent Orange when conscripted into the Vietnam War, points out that being \u201cpalatable\u201d to the mainstream isn\u2019t possible\u2014or even desirable\u2014for her. \u201cI still have this anger when it comes to U.S. imperialism. I wouldn\u2019t have had my spina bifida if the U.S. didn\u2019t see brown bodies and my dad\u2019s brown body as disposable.\u201d <\/p>\n\n\n\n Between physical inaccessibility, dropping COVID-19 precautions and a lack of financial and community resources, many SBers I spoke with said that it\u2019s hard to find spaces to meet and gather in both in-person and online. <\/p>\n\n\n\nThe struggle with identity<\/h4>\n\n\n\n
Finding queer community<\/h4>\n\n\n\n
Obstacles to connecting<\/h4>\n\n\n\n
![\"\"](\"https:\/\/xtramagazine.com\/wp-content\/uploads\/2022\/10\/Picsart_22-10-12_03-32-13-797-scaled.jpg\")