Spencer West, a disabled and queer activist, is proud of himself. It’s not his success that defines him, though opening for Demi Lovato’s 2014 World Tour as a keynote speaker and climbing Mount Kilimanjaro (raising half a million dollars for clean water in East Africa, BTW) are some pretty powerful feats. Rather, it’s his role as an activist who brings disability issues to the forefront of every conversation. He's written a biography, starred in documentary, and started a business as a motivational speaker. No matter what he's doing, he's advocating for disabled people to have room in all spaces—including the queer community.
I FELL INTO THIS ROLE. I definitely wasn't looking to be an activist. Ten years ago, I had the opportunity to write a biography. And as I looked back at all the people that influenced me, I realized that all of them were activists in their own way; maybe not always overtly, but inadvertently, they were activists. I'd always gravitated towards people that we're experiencing some sort of oppression or inequity, and was so enamored by the drive and fire that they had to fight against that—to work really hard to bring diversity, equity, and inclusion into everything that they did.
Does [being an activist] get exhausting? For sure. But I willingly put myself online and put myself out there understanding that this is part of the deal. There are some days that I don't want to answer [questions]. And it's my right not to. But that's why I try to use my TikTok in a way to educate folks. I can help answer the questions that they have, even before they knew that they wanted to ask them. People are curious, and that's good.
But I also want to make a distinction—sometimes non-disabled folks have a hard time understanding this. I use TikTok as a way [of educating] folks and [bringing] awareness to my experience. And because I've grown up with [my disability] my whole life, there's a lot of people that would want to come up to me and ask me these questions. I'm happy to answer them, but sometimes I just want to buy my clothes at H&M and go home. I don’t want to give you a lesson. Of course, I have a disability, there are going to be some times where I don't want to relive my trauma so I can educate you while I'm at McDonald's ordering my chicken nuggets and my apple pie. It's important for non-disabled folks to understand that consent is important in all aspects, specifically in the disability community.
I WAS BORN with a genetic disease. [My legs] were amputated below my pelvis when I was a kid. And, part of the privilege of my disability is that I can get out and walk on my hands. So I use my wheelchair more as a mode of transportation to get around.
I grew up in a time where [disabled people] were told you don't want to be seen as disabled. You want to be seen as just like everyone else and to fit in. Now, I'm having to unlearn all of that internalized ableism. People didn't know any better [and] that was just time. You're literally watching me unlearn and learn a lot of [internalized ableism and] how I probably play a part in this. It's also important to always say that I'm just one person and this is my experience. This is not the experience of every disabled person. And everybody's experience is different. I can tell you about my experience, and there might be some intersectionality between other people with disabilities, but everyone's going to have their own. And secretly that's actually the beauty of our community—that there's so much diversity even in our own disabilities too.
I was born in ‘81. I lived [in Wyoming] up until I went to college. Wyoming was a beautiful place to grow up if you love the outdoors. I really enjoyed the sense of community growing up in a small town called Rock Springs. But the challenging thing for me was: there didn't feel like a lot of diversity number one, and there wasn't a lot of queer representation, at least at the time. Up until 1998, Wyoming was sort of known [for] having Yellowstone National Park. Then, [in] ‘98, Matthew Shepard was murdered in our state, and suddenly, we were known as the state of hate. Again, I enjoyed growing up in that small community, [but] there were a lot of challenges in regards to looking different and being different. I didn't come out until I was 21, because it just didn't feel safe to do so at the time. I genuinely don't know what the culture is there now, but that was my experience [when] I lived there.
There [weren't] a lot of examples of [queer] folks that [I] could look to because queer representation didn't really exist on TV. Will and Grace premiered in 1999, and that was my last year of high school. Up until that, [queer people] didn't really have any representation that we could see in the media. I had some really close friends [who] were also gay. We all stuck together, and none of us were out at the time. But I think, maybe unconsciously, we banded together because we knew. I never felt alone. I felt there was no one to look to [or] to model after.
THE INTERSECTION BETWEEN my disability and [queer identity] was a couple of things: we live in the age of online dating, so I was finding that I [had] to come out twice. We were all on the same app, so we knew we were [all] gay, but then I felt I had to let people know that I had a disability. And, that usually went one of three ways: “Oh, I'm not interested in this.” “Why didn't you say this before?” I would be blocked or people would say, “This isn't really my thing.” I would be fetishized—“Oh, I've always wanted to be with someone that doesn't have any legs.”
[The queer] community tries to be so inclusive, [but] the disabled community is oftentimes left out in conversation[s]. I currently live in Toronto. We have entire neighborhoods on Church Street called the Village. Ninety-five percent of those spaces [are] not accessible. They have barriers to get into the building; there aren't accessible washrooms. The spaces are so small that I feel I take up too much space. There's not really for me to move around. And, this is a lot of queer spaces.
Just outside of the queer community, too, we still live in a world that is full of barriers. I've been saying this during the pandemic: everyone's experiencing what it's like not to have access. And when the pandemic is over—whatever that looks like—y'all will go back to a world that's accessible to you, and also go back to a world that isn't accessible to me.
With every Pride Month, I always hope that we start to focus on the intersectionality of everything. When you look at Pride, it started out as a riot by a trans disabled woman [Marsha P. Johnson]. I think it's important to remember our history and that, although there are so many beautiful freedoms that we have now, we still have a long way to go, specifically when we look at trans women of color in our community. But there's a lot of freedom that a lot of people fought for, and many of them lost their lives for. Pride is a beautiful time for us to remember how we got here, and why we got here and who got us here. It's a beautiful time to celebrate who we are. But also a time for us to realize how far we need to go, the support that needs to continue for everyone in our community, whether you're disabled [or] racialized. Continue to fight for [Pride to be] more inclusive.
And, although we celebrate Pride Month in June—which I love—I think it's a forced time for the world to look [at queer people.] It has to happen every day. You have a campaign every month to celebrate [the queer] community or the disability community. I believe that everyone's liberation is all tied up together. And if we all work together ... what's good for me is also good for you, and good for the global community as well.
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