Brena Jean
Oakland, CA
“…being “deemed disabled” [sighs] shifts your power in society because of your inability to contribute to capitalism the way that able-bodied people are.”
Ryan Roach: How do you identify?
Brena McEwen: I use she/her pronouns and I’m a queer, Black, disabled, fat woman [laughs] with lipedema.
RR: Could you also tell us a little bit about yourself?
BM: I am originally from Oakland, California, and I’m 38 years old. I grew up here – well I grew up here in Oakland, but I ended up moving to the suburbs later on in life. And that kind of changed everything. I, like, had to find work, and it wasn’t – it just was not easy to find work there. Especially, like, I didn’t have the words for my needs – my physical needs—at that time. But I knew that I had trouble standing for a very long. So I ended up becoming just an entrepreneur really early. I started a school, a Montessori school, in my home. I became licensed and I took care of children for about eight years until the economy collapsed.
Oddly enough, my mom got ill around the same time I started my business, and her illness ended up resulting in an amputation. So she actually helped me in my business. She actually left her regular job because she could no longer do it because of cancer and an amputation. And she ended up helping me run the childcare home that entire time. So that was really interesting.
But later on, after the economy collapsed and my mom passed away of cancer, my dad subsequently passed away. I actually came back here to Oakland and actually ended up going to boot camp to learn coding. And I didn’t end up going into engineering and coding. I actually work as what we call a “Q-A” now. So I work in quality assurance as an engineer here in the Bay Area. [Laughs]. And that’s my whole story.
RR: What has your experience been like during this pandemic?
BM: It’s been frightening. It’s been lonely. It’s shifted work for me in a way that I think has been really helpful actually. I was really struggling to go out to work every day, and I was afraid to admit that. I can’t believe I’m admitting it now. [Laughs].
But working from home helps me tremendously as far as pain management goes and just to be able to take care of myself. I have everything I need at home to take care of myself. So this makes work a lot more accessible to me. And, unfortunately, if we end up having to go back to work, like if that’s something that we’re forced to do for any reason I would probably have to find a way to do it. I’ve struggled to make working at home, like, a deal- breaker for me to get work. So that’s been heavily on my mind in regards to just the whole – the pandemic – is really work. I know health probably should be, but my work has been a very big deal.
RR: That sounds like a common experience for a lot of people now because, I mean, whether it’s losing jobs or completely shifting the experience of how your job functions, it’s so normal for everybody right now. We were both working as personal care assistants before this and now we’re not because we can’t go into peoples’ homes, you know? It’s just been such a change.
BM: Right. I had an opportunity to shift my uncle’s care that I’ve been doing to someone else when I was going into the office. But now I can’t have anyone come in and help me with him while I’m working. I mean, we’ve been doing fine so far, but I think there are definitely times when it’s challenging. I also can’t get help cleaning my home anymore, which I really, really needed. [Laughs]. Even my best of friends can’t come in to clean my apartment – even though they want to with all their heart, you know? It’s interesting to have so many people want to help but can’t really because we’re all at such a risk.
RR: What has your day-to-day been like during this time?
BM:[Laughs]. I wake up and take my first meeting from the bed. I’m really terrible at getting up in the morning. [Laughs]. So I have a quick call with the engineering team at like 8 am to 9 am. And I’m usually, like, literally in bed and taking the meeting on my phone. Then, after that, at nine o’clock I’m up. I roll out of bed – literally – and just sit here. And just get to, you know, checking Slack and doing my “stand up” meeting, [laughs] which I don’t have to stand up at anymore, so [laughs]. From there, just working online and really just communicating via Slack back and forth. I have a lot of meetings. Like, lots and lots of meetings. Like, actually, one of the most challenging parts of organizing work at my job is how many meetings we have during the day. I’m always listening to meetings and keeping up with what my uncle might need in the moment. No matter what’s happening, he’s always consciously on my mind, you know? So I always know where he is in the apartment as he’s moving through, or what he’s doing. So he’s always a part of my consciousness.
And shifting around as I need it. I need to get myself food, I need to get him food. I need to sit down frequently. We have a lot of deliveries that come to our apartment building. And it’s so funny – I’m now the key woman for the building. There’s no way for them to get in because we don’t have a buzzing system. But, since I’m in the front of the building, I can see all the traffic that comes by and I’m only one floor up. I kind of just lift my blinds when I start working and, when I see the UPS guy, I just get up. And I’ve separated my keys, so now these [holds up keys] are just the building keys to get in. So everybody gets their packages. [Laughs]. So I just toss my key out of the window and he goes to bring it up to the second floor and they hang it on my door. I’ve learned their names – I know the UPS guy, his name is Kelley. Sometimes he doesn’t have a package, but he’ll just honk and I’ll wave. It happens with the FedEx guy, the Amazon people – they all know I have a key for them. [Laughs].
So that’s probably the most interaction I get during the day with someone, aside from my uncle, is the delivery people outside. [Laughs].
RR: During the pandemic the media and politicians have continuously stated that disabled people and those with underlying health conditions are deemed “vulnerable.” What are your thoughts on that label? And what are your thoughts on the media and governments’ responses to these “vulnerable” populations during this time?
BM: I think the way the government has been responding, and just the President alone, I think his goal was to “de-escalate” and “downsize” the number of people that we should care about in the pandemic. I think the language, using “most vulnerable,” when we’re not checking how we view vulnerability in this country or anywhere, and we’re not checking how, you know, racism, and ageism, and classism, and ableism are still very much-so values that we’ve internalized – when we are viewing “vulnerable” and considering who might be vulnerable populations, we are, we’re very misskewed, right? So I think using that language was extremely misleading, not considering our, you know, these screwed up values that we have. And it made us focus on elders, and that was it.
Or people who we thought had physical disabilities that we could see, right? But no one else [laughs], right? And when it came down to it, when we started to see how high those numbers went, it turned out that the most vulnerable populations are always the most vulnerable populations. That Black communities were – are still, yet again – the most affected communities. And that the more intersections that Black people have, the more vulnerable they are. And that’s always the case. Right?
And that conversation, that monologue, we won’t get from our governments. We won’t [laughs] we won’t hear – I don’t know if we’ll ever hear – that these communities are always vulnerable. And they’ve always been vulnerable. And unless we shift how power works in our country, they’re always going to be vulnerable. Right?
RR: Messaging from the media and the government has focused on re-opening the economy while sacrificing the so-called “vulnerable” populations, yet it has been rare to see individuals from these populations invited to speak with politicians or mainstream media outlets. Why do you think these populations have been frequently talked about but rarely invited to represent themselves?
BM: That they’ve been left out of the conversation? I mean, they’ve always been left out of all of these conversations. I think part of it may have something to do with how we center capitalism in our values. Or how capitalism shapes – has shaped our values. Disabled people are some of the most underemployed communities.
I read something recently, I think it’s in Capitalism and Disability. I think that’s the title of the book. [Laughs]. I’m probably screwing that up. But the author made this full-circle explanation about how being “deemed disabled” [sighs] shifts your power in society because of your inability to contribute to capitalism the way that able-bodied people are. And that was new for me. When I read that recently, that was a new consideration for me. So when I think about why we aren’t centric to these conversations, I think
it’s because of how our values are shaped around capitalism and who is centric to making that work. And that seems like a monolith to conquer. To talk about, “Oh, well, we need to talk about how capitalism has shaped our values.” I still think we should – we can have these monolithic conversations [laughs], you know, despite the fact that capitalism comes up. It’s such a broad thing to bring up. But I think that might be the reason. If we put people at the center of these structures, we might destroy them. [Laughs]. And I’m here for that. [Laughs].
RR: Over the past few months businesses, schools, and universities have started to accommodate the general public with accomodations like work from home or tele-health services. A lot of these types of accommodations had been asked for previously by the chronically ill, disabled, and neurodiverse communities, yet these communities were almost always denied. Why do you think society has been able to quickly adjust to accommodate the general public when these requests for accommodations were almost always denied in the past?
BM: I mean, I think why they’ve been denying them is the thing – is that they’ve been denied before. We’ve been able to make these accommodations for a very long time. We’ve always
been able to make these – I won’t say always, but we definitely have been able, within the last damn fifty years, have been able to make accommodations where people could work from home. I had an aunt who was differently-able bodied who worked for IBM and worked from home back when the internet sounded like [makes a modem sound], you know, like, [laughs] right? So, back when we were still, you know, mostly snail-mailing things. We’ve been able to make these accommodations for a very long time. The gatekeeping to that has been the reason that they haven’t happened.
I think right now, with the pandemic and the way we quarantine here in California – which was fairly earlier I guess than most states did – I think what happened was, folx with power and influence to say yes, or to have influence with our governments shifting, were impacted because of this, of the, honestly, the language of “vulnerable” populations. Everybody all of a sudden, even though they may have not thought about themselves being vulnerable, could or knew someone who was an elder or had a family member who was an elder, which was the face of who would be most impacted by COVID for a while to folx. And [laughs] it actually humanized “vulnerable” for a while. I think those people with power and influence, you know, coming together around the idea of humanizing vulnerability, said, “Oh no, we have to protect ‘our vulnerable’ – OUR vulnerable.” We all of a sudden had a “vulnerable,” you know? I think power and influence humanizing vulnerability is why they – [snapping] that accommodation happened so fast. And I question why isn’t “vulnerable” humanized all the time?
RR: Going forward, in an ideal situation, how would you like to see society start responding to this pandemic?
BM: [Laughs]. Pay the most vulnerable people to design the systems that we need to stay alive and navigate the world. Period. Period pooh. [Gestures hand across her neck, laughs]. And you can quote me on that. [Laughs]. Disabled people are some of the most underemployed communities, and yet we are essential to the design of the sustainable world for us [laughs], you know? So pay the most vulnerable who will inform these systems that will sustain everybody. [Laughs].
RR: Absolutely. I love that. That is the absolute truth. Then in your experience during this pandemic, do you have any accommodations or supports that you typically need that have been interrupted by this?
BM: Help around my house. Again, I do hire people to help me clean, specifically the bathroom and my kitchen. So that’s been super hard to do just because of my inability to stand for a long period of time. I have so much to do. Like, even if I had a little bit – if I was able to get help with Robert, with my uncle, I’d probably have enough capacity to shift, you know, to something else. But either getting help with respite care for my uncle or help cleaning my apartment are the two things that have been hard. And it’s hard because I’m always in here now. [Laughs]. We are always in this box.
RR: What has your experience been like accessing information about the pandemic?
BM: [Sighs]. It’s been very interesting. I’ve been able to successfully get information that’s true from local community or organized groups on Facebook. We have groups that come around that have just formed that are, you know, deep – like – connected to the disability justice movement. Those groups have been giving really clear information that has been consistent for a long time. More consistent than information that, you know, is coming from the President even.[Laughs]. Navigating what’s true, even with the CDC’s website, is - hasn’t been necessarily easy [laughs] at all. And the CDC’s website does change, [laughs] you know? So, it’s hard to find news that seems accurate and also local. Some of the information about the pandemic that was most relevant would have been information for me that was local to the San Francisco Bay Area. Not even, like all of California, but literally, specifically to the San Francisco Bay Area. I should know where every testing center is and I don’t. I have no idea. I don’t even know where to begin to find a testing center. [Laughs]. Where do I even go to find a local testing center? Is there, you know, a website? What are the structures I have no idea.
RR: Yeah, it’s been challenging. We just got tested recently, actually, but it’s just cause DC rolled out a lot of local testing. And everyone was posting about it luckily on Instagram. But it wasn’t that easy at first and my roommate is still waiting for her test results and she’s been having trouble finding a phone number to call. Even though we all went together and got our results already. It’s just one of those things.
BM: It’s so weird. I was able to access a test for my uncle because of how his medical care works and what his vulnerabilities are. We did that maybe four weeks ago. But they could not test me – they were not a public testing site. I could not get tested. So I really relied on the evidence from his test to determine where I was. [Laughs].
RR: Right now, in addition to the pandemic there have been uprisings across the United States. These uprisings have led to physical protests in support of the Black Lives Matter movement and against Police Brutality. A lot of the physical protesting occurs in the streets and usually those spaces aren’t always accessible to disabled, immunocompromised and neurodivergent folx but these communities always try to show up if they can. Have you been involved in the uprising at all? And if so, what has that looked like for you?
BM: I’ve not had any experience protesting in a physical space recently associated with Black Lives Matter. I have been just making donations to organizations, either Black Lives Matter directly or your local Black Lives Matter chapter or anti-police organizations or organizations supporting trans or disabled folx. Or trans, disabled, and people of color organizations. I’ve been very specific to what anti-police organizations and Black trans organizations I want to contribute to. Or queer organizations I want to contribute to. They must support Black trans communities.
RR: That is all the questions we have for you today. Is there anything else you would like to share with us?
BM: [Sighs]. I think one of the things that I guess I didn’t say in the interview is that I struggle with emotionally is loneliness during the pandemic. Physical touch is something that might be an access point for me. I don’t know if it is yet, but it depends on how long we are going to be quarantined and how I’m going to have to continue quarantining to even determine that. ‘Cause I think it is shifting. The person that I live with, his access needs are not touch, you know? So, and part of mine is. [Laughs]. And it’s getting’ tough. It’s getting tough.