Diversability Unplugged Recap: Disability and Digital Advocacy
A screenshot of Diversability Unplugged: Disability & Digital Advocacy shows Marcela, a disabled Latinx woman speaking along side a diverse panel moderated by Jessica Lopez featuring Lydia Brown, Emily Ladau, and Mya along with two ASL interpreters. The words “Thank you for joining!” is in navy font in the bottom right corner.
By Marie Dagenais-Lewis, Content Associate at Diversability
The era of social media has revolutionized the way we communicate, paving a path for a new age of digital advocacy. Social media hasn’t just given us a more accessible way to connect with the world, but a way to create our own careers as well, which is why our August Unplugged event dived into the world of digital advocacy.
Diversability Unplugged: Disability and Digital Advocacy happened on August 25, 2021, bringing together members from the Diversability team and four powerhouse panelists from the disability community for an open conversation surrounding social media and digital advocacy. Panelists included Lydia Brown (@autisticchoya), a Disability Justice Advocate, organizer, attorney, strategist and writer; Mya (@immarollwithit), a disabled creator who uses TikTok to advocate for inclusion, access, and acceptance: Emily Ladau (@emilyladau), a passionate disability rights advocate, writer, storyteller and digital communications consultant; and Marcela Marañon (@thejourneyofabravewoman), a disabled solo world traveler sharing her journey to empower and advocate for accessibility. Jessica Lopez, Diversability’s Social Media Manager, moderated the event, kicking off with welcoming attendees leading into introductions, allowing each panelist to introduce themselves. Then, the conversation really began.
Getting to the bottom of the lack of awareness
Moderator Jessica Lopez started the conversation off by asking panelists why they thought mainstream social media was still largely unaware of the disability rights movement. Lydia Brown placed the blame on Ableism, saying “It comes down to Ableism right? The Ableist belief that disability and disabled people aren’t worth making space for; don’t belong in society; shouldn’t be present; and that our presence when it exists is burdensome, uncomfortable, inconvenient or even terrifying or threatening to non-disabled people, all of which is even more amplified and heightened for disabled people who are marginalized in other ways.”. They went on to clarify that while the question specifically mentioned disability rights, their work lies in Disability Justice, which goes deeper than disability rights in recognizing the ableism that is ingrained in society.
Jessica then tossed it to panelist Emily Ladau, who added “We have an ableist mindset where people are not actively seeking out disabled created media.”. She went on to say “I also think what happens is that disabled people get stuck in our own echo chambers. I’ve noticed this quite a bit, where we end up having conversations with ourselves and this is by no means our fault--it’s often because we are in many cases on the margins of marginalization, so when we are trying to engage in conversation people are not necessarily engaging with what we have to say. It’s very challenging because it’s a sense of validation when you put yourself out there into the void and someone who is disabled come back and say I relate but I have tried to move beyond that particular bubble [to] connect with non-disabled people.”.
Mya was the last panelist to answer, mentioning that the problem starts at school, saying “I remember when I was in elementary school, I was separated from students who had any type of support needs, whether it was physical or just academic. We were always separated from the students. The disabled students were not allowed to interact with us non-disabled students, so as a kid I thought I was supposed to stay separate; I’m supposed to give space; I’m not supposed to interact. I’m sad to say that, but I think that because a lot of students were constantly separated, we never learned how to interact.”. She went on to say “There’s just so much separation between disability and the rest of the world and I think because there is such a separation from such an early age, there’s no chance to learn there’s no chance to have awareness. There’s just no opportunity to learn, unless you search it out.”.
Encountering Ableism In Your Digital Advocacy
Jessica moved the conversation along, asking panelists how they experienced ableism on social media and how they deal with it. Marcela answered first, saying “I go to different places to try wheelchair access, so I create content where I highlight the problems [like] ‘hey look, I went to this place and this is what happened’. People will say [things like] ‘well, you know that roller coasters are not made for [disabled] peoples’ or ‘she’s in a wheelchair, why does she need to ride a rollercoaster?’ so that's, at least for me, very hurtful.”. She went on to say how she loves herself so that’s not why comments like that bother her; those kinds of comments bother her because she worries that someone who just became disabled would read that comment and believe that they don’t belong. “Those mean comments really influence the disabled. People assume that people with disabilities cannot do things because of our disabilities.”
Lydia took the floor next, answering the same question saying “It’s just very common for people to respond or write about things that I have said online in ways that are incredibly dismissive, or invalidating of just to impute words or ideas to me that never even existed to fit their own aimless narrative.”. They went on to talk about the insidious ableist obsession of questioning the validity of a disabled person’s diagnosis. “There are people on the internet that are obsessed with whether or not I’ve self diagnosed being autistic. In my particular case, it’s pretty well documented and you can find it on the internet that I happen to have been professionally diagnosed, but the problem with that obsession is number one, the broader obsession with trying to figure out which disabled people are fakers or frauds or lying. And number two, the belief that if someone has self diagnosed that they’re automatically a ‘attention seeing person obsessed with playing the victim card who can’t actually be disabled’. We talk about in the autistic and other disabled communities about why self diagnosis is actually sometimes necessary when the medical industrial complex doesn't listen to you. This is one way that Ableism is really common in people whether they are disabled or not--obsessively trying to figure out who the ‘real’ disabled people are. They think that they can silence and disappear disabled people whose voices they find inconvenient.”.
Emily brought up the ableism she experienced surrounding her choice of identity first language. “I call myself a disabled person. That’s a very conscious choice on my part and inevitably, somebody will come on to my posts and tell me I should be calling myself a person first a person with a disability. I always try to be very clear that I respect personal preferences, but when you have people--disabled and non disabled--undercutting how you present yourself it becomes an incredibly pervasive example of Ableism”, she says. Emily continues by saying, “I think Ableism is just something that when you are a disabled person who has any level of visibility on the internet, you’re welcoming--whether you like it or not. It’s a challenge to grapple with, but it’s just like a pitfall I think to be aware of, not scare people away--just be aware of it.”.
Mya shared that for her, the “most pressing thing is just how normalized ableism is and now normal and acceptable it is to negatively treat disabled people. Earlier, Lydia mentioned something about how there are trends going around where it’s mocking disabled people and that is a thing. Making fun of disabled people can be trendy and that blows my mind. When we call it out and say ‘hey, a microaggression like that is not comfortable not acceptable please don’t do that’ I get hit with “well it’s internet culture; you put yourself on the internet; you should expect this, this is how the internet is”. And yes, while internet culture does have a lot of negativity, a lot of bullying and harassment...is that really the level that we want to set as being okay?”.
Navigating through the toxicity on social media
Lydia Brown shared one of the most important things you can do when dealing with negativity on social media is to cultivate a network of care. Although, they acknowledge not everyone may have the access to that kind of support, they state, “Who are the people that you go to? Who will remind you to shut it off, log out? The people who will check your messages and filter them for you. The people who will remind you that you are safe, that you are supported, the people who will help you practice physical safety and security practices that you would follow that will help you especially if you don’t have the energy, the capacity to think through what that means for yourself. The people who will remind you that you are not obligated to sacrifice your entire mental health and wellness and vulnerabilities and every single detail about your life to every stranger on the internet. That you don't have to do it just because well, it'd be good advocacy and might raise consciousness people might relate to. That you get to decide what you wish to share or not that you are allowed to set limits and boundaries. And if you wish to, who will fight for you, who advocates for you to go against the trolls or help you shut them down. What’s going to be effective, or supportive, for any given person in any particular situation when you're facing online abuse--let's be clear this is ABUSE we are talking about--is not going to be the same or identical from one situation to another.”.
While support may come in many forms, the need for support is always there.
The conversation shifted towards getting the panelists’ advice on creating a support system. Lydia said “I think we need to shift the framing of this conversation--it's not how can we individually create a support system out of nowhere, but how can we collectively. If you’re wondering where’s my support system, I would also ask if you are able, what are the ways that you might be able to provide support to others. It doesn’t have to be money, it might be a nice text; kind note; clipping from a plant to propagate; there’s so many ways that we might be able to provide some at least small measure of care to other people in our lives that don’t necessarily assume money, or at least large amounts of it.”.
Marcella spoke next. “I think that in general, having a good support system is very important for any human being.”. After sharing how she has many friends who are disabled in nursing homes, she stressed “If you know someone out there that you know is disabled and you see them alone, or you have friends in nursing homes [that live] close to you--give them a call, text them, make meals for them. Try to take them out--there are so many young disabled people in these places that do not have anybody.”.
Allyship: a verb
Mya shared that the best way to be an ally is to be empathic and supportive, saying “the first and biggest thing that I would say when being an ally to a disabled person is being as understanding as you can with whatever information that person is willing to share with you. If they share their diagnosis and what their history is, look into their diagnosis and educate yourself. Learn what the symptoms are and what the needs are. But more importantly, ask them what their support needs are. When someone asks me ‘what are your support needs’ that makes me so happy because that tells me this person cares about making it so I can function and live my best life the best way I can. That is a much better question than ‘what is your disability’ ‘what is your condition’ because what you can do to support me means so much more to me than whatever it is that is happening because, again, I’m undiagnosed...even I don’t know what my diagnosis is.”.
After Mya, Emily highlighted the intersectionality of disability added “I think too many disabled people feel like they’re absolved of having to be an ally, because they are disabled and therefore, you know they’re a marginalized person so they don’t have to support other disabled people...I am a white [disabled] woman and no, I do not understand the experiences of black indigenous people of color with disabilities, I do not understand what it’s like to be trans and disabled..”. She went on to say that allyship is an action one takes, not to be patted on the back for.
Lydia built upon that idea, saying “We are not allies, we work to practice allyship. It’s not something that you can do in a day or a week or a month and say ‘okay, I did these things so I am an ally now’, or ‘I support these issues I support these demands so I am an ally’. That doesn’t make you an ally, but it can mean that you are a person practicing allyship.”. They continued to say “The real question is, what are we doing to incorporate practices of allyship and solidarity; what are we sacrificing, what are we giving up, what are we willing to lose. So many people who try to do allyship performatively will stop hash tagging, they stop talking about it the instant they worry they’re going to lose something--lose power, lose money, lose social standing. Where is your solidarity when it counts.”.