Calum Glendinning Clark: Divergent and Litmus Media would like to respectfully acknowledge the Traditional Custodians, the Awabakal, the Boon Wurrung and Wurundjeri People, on whose land this podcast series was produced and recorded.
When we look at the world around us how it is built the design of environments use of technologies, stairs, doorways, public transport, health care and employment. In its simplest form, we see a body and in its most complex form the construction of a body. Such a constructed body is based upon assumed majority or norm, branching back to industrialization and eugenics. What about the 1 billion people in the world who are differing, varying, or dissimilar or unalike or even divergent, in terms of their psychological and physiological functionality? If the body is something fluid and infinitely variable, what are the consequences of a world that assumes and prioritizes a body that functions in a particular way?
My name is Calum Glendinning-Clark, and I live in a divergent body as a walking paraplegic, and a writer with a traumatic brain injury. Pardon the paradox. I am to raise awareness about one of the largest minority groups in the world. This podcast will explore and discuss the barriers surrounding accessibility and possibilities when it comes to disability support, recovery, and community. It will focus on individuals’ experiences, identifying and navigating these barriers, along with the services in place to assist in this process. It will also discuss the emotional as well as physical impact of these barriers in the day to day lives and experiences of people with disabilities.
Welcome to Episode One of Divergent.
Emily Barker is a Los Angeles based multimedia conceptual artist, designer, friend, trailblazer, and disability activist who uses the material in their life to inspire the modalities and formal values of their work. In 2012, at the age of 19, during the summer after their sophomore year at the Art Institute of Chicago, Emily suffered a T9 L2 incomplete spinal cord injury. Emily spent six months in hospital had countless back surgeries and was diagnosed with chronic regional pain syndrome or CRPS. In my view, Emily's thoughts, achievements, activism, and insights into what it's like to try and navigate a world that doesn't accommodate their body demands more attention than the experience of becoming disabled in itself. Emily studied at the contemporary art school of Los Angeles and had their first solo exhibition at murmurs gallery in January 2020. They've given artist talks at the Royal Academy of Art and UCLA. They have been published in several Arts and Architecture magazines that educate the world about disability austerity and the built environment but their Instagram @celestialinvestments, while building their own fully accessible living space out of a used RV, they hope to turn into a mobile artists residency for other wheelchair users.
Emily Barker: Yeah, a lot of my art does focus on objects that I use in my daily life that were really alien to me. And I thought were really visually interesting. When you install 120 catheters on the wall, they no longer take on the same implications, I think like contemporary art can be very sterile and a lot of the mobility, a lot of the these medical devices have obviously a sterility about them as well. And they're also how I tell time, so 120 catheters can last me three weeks. So, it's just talking about the economics of disability and the amount of waste that you produce being a disabled person and not having these things be biodegradable yet as they should be. Roho cushions are what keeps me from getting pressure sores sitting in a wheelchair all day and they're very important to, to not getting life threatening infections, a lot of paraplegics and quadriplegics I know are antibiotic resistant to many antibiotics because of the amount of infections that we get and deal with per year. Whether those are UTI bladder infections or pressures or wound infections.
So the Roho Cushion is is I think, really an incredible advancement as well as the catheter, to keeping people with spinal cord injuries alive. And I don't think people when looking at a catheter or looking at a Roho Cushion, understand the importance of those items. But without a catheter, paraplegic, or a person with any spinal cord injury, who couldn't use their bladder would be dead within a few days.
I have given many talks where I mentioned the visibly disabled body triggering fear in able bodied people. And I think it's a guilt response. I know, I mean, I was able bodied for most of my life, two thirds of my life at this point, and and I remember being like curious when I would see someone, I'm like, trying to remember my able bodied gaze, basically, since it's been, like nine years, eight or nine years. But I think it's just like this shock. People think that people think that disabled people don't exist, because we're forced to stay in our homes all day. Or we have not had until recently, the assistive devices necessary to to be out in public. And it's still really, really hard even if you have all of the mobility devices like I took my dogs for walk yesterday and was stranded several times, trying dangerously to avoid obstacles because the sidewalks don't exist in my neighborhood. Like they're literally just aren't sidewalks or there's a fire hydrant in the middle of the sidewalk, I can't get around or there's a light pole in the middle of the sidewalk, I can't get around, or there's no curb cut. It's really bad. So due to those things, if you cannot navigate the sidewalks, how do you get to public transportation? How do you get to the grocery store? How do you exist within the poverty, the force poverty of austerity laws in the US and have enough money to have the devices necessary to exist independently, and not be stuck at home? And I think that I think, I think the disabled, the visibly disabled body represents the fragility of the human body. And I think able bodied people, when seeing someone who's disabled are reminded of their own mortality and are reminded of their own fragility within space. And I don't think it's something that a lot of people are willing to confront about their bodies about themselves. I think people live in this, like really intense cognitive dissonance about health and wellness. And, and, and don't understand that at any moment that can be taken from you. And it isn't even a psychological thing. Like it's just I mean, a spinal cord injury is as physical as you get. And I think that there's a lot that we can talk about in regards to neuroplasticity, and healing and the advancements with that and how mentality and mindset is really important. And I think you're a testament to that. And your story is really a testament to that. And you've definitely inspired me to try harder to work on my CRPS because the only way I'll be able to reverse My CRPS is if I get movement back in that limb. And so it's just like double edged sword, my paraplegia and my CRPS kind of enforce each other.
But I I back to the able bodied gaze I I think that people who others consider like too abnormal, even though normal doesn't exist, but for the sake of what I'm talking about, you understand what I'm saying? I think it it incites fear into people and I can tell just like I can just see on people's faces like oh, like that person has the audacity to be here telling us what's what. And it's you're dealing with being infantilized and feared at the same time it's just really funny I and it creeps up on people to like people I'll know for a while and then they'll start doing some ablest stuff and they won't really think about what they're saying. And it's it's it's pretty hilarious.
Just that all super villains are disabled and or are like abnormal or queer in some way and that disability in cinema and culture has often been something that is mocked or has been used as horror. I mean, just watch any episode of American Horror Story like it's, it's a, it's become such a trope within the subconscious of disability is something to fear. I think culturally and health wise that it's people don't want to see it and when forced to see it, I think fear is often the response. And it's really, it's really a shame when people tell you that you're intimidating when you're actually like a really, um, I don't know, like, I talk to people. I don't, I'm a very like open person. When it comes to talking to strangers or to engaging with others in my daily life, like at the supermarket or the like, whatever, like, it's, I think like a lot of people project their own insecurities and fears onto disabled people because they couldn't think of a worse position to be in. I don't think being disabled is inherently negative. I think that like, just the world is completely built up against and in conflict with the disabled body. And it really strips you of a lot of not only dignity, but just like freedom. And, like for me, you know, it's it's not a choice that I have to use a wheelchair or I don't have like, I can't I have a lot more mobility than some of my other friends. But it's and I'm like really lucky in that regard. But I still can't like if I get to a curb without a curb cut, I can't get up or over it.
And so what do you do if you can't even use the sidewalks like I'm not even talking about fun stuff like, like, outdoor stuff or, or anything, I'm talking about the most basic basic access and it doesn't exist. And I guess for some disabled people it does where they live, and that's great. Um, but yeah, I don't I don't think people are really willing to look within their themselves and their fear of their own mortality and their own bodily fragility. And I think we remind people of that, and that's hard for for some to to contend with. I think it's hard for most people to contend with.
CG-C: I was introduced to Emily's work when I attended a Zoom lecture that did at UCLA after my injury in January 2019. Learning to live in a wheelchair initially, and then focusing almost solely on my recovery as a T12 L2 paraplegic, I felt very confused about my identity and internalized ableism. As I eventually became a walking paraplegic, Emily's work and thoughts opened up a world for me in which I felt I had a voice and allowed me to start to explore the separateness loneliness and struggles I face this song with a neurodivergent body. And since this time, Emily and I have become friends over social media and Zoom. This is how I started to educate myself about my place in the world. And I don't mean identity politics, I mean, starting to see how the significance of access to essential cost prohibited items and care influences the trajectory and daily experiences of someone with the disability.
This kind of cognitive dissonance, Emily talks about that might arise in the able bodied population. when interacting with or viewing a divergent body influences, I guess, how much the able bodied population are willing to deal with what is palatable for them.
I started to realize my geographical privilege as a dual citizen and passport holder for both Scotland and Australia. By sustaining my injury in Australia, I had access to the National Disability Insurance Scheme, or NDIS for short, a scheme which was introduced in Australia in 2013. It also seems worth mentioning to you that the NDIS was first rolled out in one of the cities I was discharged to after being in the hospital in Newcastle in New South Wales. This disability specific scheme is a budget that is allocated to someone by the government body, the National Disability Insurance Agency or and the NDIA. If Emily had had their injury in Australia and completed an application they will be assessed and allocated funding based off of needs that would be specific to the management of their disability. Plans typically last for six to 12 months, which at that time, your ongoing needs are reassessed and reviewed in a planning meeting. For me, my current nd is plan funds one on one support or capacity building they call it to help me complete things around the house that I cannot do on my own and attend appointments specific to the treatment and management of my disability. For me, the scheme's funds things like my catheters, of which I use 10 on average a day, occupational therapy, physical therapy. Any essential equipment for mobility, which used to be my manual wheelchair, four wheeled walker, then became crutches then became a cane. And for example, still using an ankle and foot orthotic. All of these items and the assessment, prescription and maintenance of them adds up to well over $10,000. Occasionally, there are shortcomings to the NDIS, a lot of which have to do with the bureaucracy of the system. Take a couple of weeks ago, for example, due to switching my service provider, which is the person who sources speaks with and manages all the stakeholders involved in my plan, I did not have any catheters and as a result had to make a couple of trips to the hospital until the next batch arrived. But at the end of the day, through the end is I'm supported to access these items pretty much for free. If I was in the US, with Emily's experience, I would most likely be on the phone with close friends or on Instagram and social media asking to borrow or buy some catheters from people who are also relying on them to stay alive, maybe even starting a GoFundMe. The contrast of this small example speaks volumes, which I'll try to flesh out in this episode.
The first interaction I had directly with Emily was on Instagram. I sent them a question after attending the UCLA lecture they gave. "Just this the body is fluid. So should be the structures that serve it. What would this utopia look like?"
Emily messaged me back and said "We have to talk I'm an L2 as well." L2 refers to the level of spinal cord injury is everything below this level in your body that is permanently affected by the disability.
Meeting Emily and witnessing their work, their openness, selflessness, riding activism, and passion to share and educate has influenced both the way I view myself as someone with a spinal cord injury and traumatic brain injury, and opened my eyes to the importance of listening to and hearing voices experiencing disability in the art world political world fashion world and just generally across the predominant culture and media in the Western world. I send Emily a bunch of ideas to think about and react to around the barriers they experienced as a wheelchair dependent paraplegic in the US, and thank them for contributing their voice and thoughts to this episode. Emily will mention some terms like SSI and SSDI, which stands for Supplemental Security Income and Social Security Disability Insurance, which is the US equivalent of the financial support, or more so lack of financial support they receive. The overarching question for all of this is what would be possible for everyone with a spinal cord injury or a disability if we all had access to a good level of care? And what is a good level of care?
EB: The National Disability Insurance Scheme in Australia sounds amazing. In the US, I know me and a lot of other disabled people go without catheters, physical therapy, OT assessment specialist driver's training, disability employment support, because those things are out of pocket costs for a lot of disabled people in the US. I know that if you have the correct insurance, you can get a certain amount of catheters per month, but it's usually limited and you're often paying out of out of pocket for those costs. And none of the disabled people that I know have access to consistent physical therapy because in on private insurance once you once you hit a plateau in your progress, and they don't see you like whatever their bizarre idea of wellness is, if they don't see you becoming able bodied, basically they just no longer provide physical therapy for you. Even if you are getting better. It's just taking a long time or even if that muscle that you now have gives you a lot more mobility and a lot more independence.
They don't really care. So those sorts of things are all out of out-of-pocket costs here. And often times we're going out, we're going without medications that we need. A lot of people die from not having access to insulin, and I shouldn't even say access, it's just cost prohibitive to have insulin cost $600 and need that every day of your life. I used to be on a medication that was $300 a day. And thankfully, was able to get off of it. But those few years were extremely stressful trying to figure out how to manage that and fight with insurance companies. And it's it's incredibly time consuming dealing with privatized insurance and Medicaid and Department of Human Services, and everything in the US they make it very, very hard to get anything that you need to live.
CG-C: To illustrate the expensive these costs for me in a one year plan on the NDIS, I receive $4'385 in assistive technology. But this is a figure calculated on how the NDIA perceive the needs surrounding my disability. When people are struggling to access these cost prohibited items in the US that are essential in day to day life, therefore is to look to crowdsourcing and GoFundMe is to raise money. To my knowledge. This happens occasionally in Australia, but not for items to keep people alive. The NDIS would help with that. Things that I might get crowdsource funding for might be like a car under six years old, which can have hand controls installed. But even that can sometimes be a gray area that can be resolved through applications to a planner. Sometimes mobility devices for an individual with a disability will be recommended by a physio, for example, and are rejected. in it. The NDIA believes they could use a cheaper version of that item, or an alternative, like a four wheeled Walker, for example. But this can get overly complicated and come down to accuracy and quality of the report provided along with other things like the planner it's sent to. Participants, though, are eligible to appeal these decisions with legal representation through legal aid. Sometimes with the NDIA because it is so young, remembering it was introduced in only 2013. There are gray areas. But from what Emily is saying there aren't any gray areas in the US at all, only alternative routes where the onus is placed on the individual with a disability irrespective of how that disability affects them.
EB: Everyone in the US because of this is forced to do crowd crowdfunding for their medications and their mobility devices. I've had to do several GoFundMe's for surgeries like for life threatening surgeries that I had to get as well as for mobility devices. And it's it's pretty humiliating. At the end of the day for your care to be based upon strangers deciding whether or not you're worth their help and I have been really grateful for the support I've received. But I've never made enough with the GoFundMe's to actually cover the entirety of the costs of whatever was needing to happen. Usually, I can get around half. And often I'm having to find ways of getting a cheaper service or product that in the end ends up just messing up my body more.
But every disabled person I know has had to do crowdfunding if they didn't have an accident that involved a large corporation in which they got a settlement. And even then, my friends who have settlements from injuries, their carers so entirely expensive per month that despite having large settlements, they still have to like pinch pennies to be able to afford their full time caregiving as quadriplegics in the US. It's it's devastating. It feels it feels like the eugenic principles of the US are just trying to to kill off disabled people. And we know that to be true because during the COVID pandemic many many disabled people died in care facilities and many well known disabled people died, who are activist and two were kind of like emblems of of change. I know that Charlotte Figi, who had epilepsy at 13, she died from COVID. Everyone has to make GoFundMe's here to get anything that they need. Because mobility devices are over $20,000. my wheelchair lift for my truck was $5,000. And that's the cheapest modification you can get for wheelchair accessibility in a car. So to get a ramp installed, or to get a wheelchair accessible van, those are used $40,000 because the modifications themselves are $30,000 to get a van modified.
And so there's no way that disabled people who are also not allowed to work without losing their IHHS caregiving can afford the cost of their mobility devices, and their medical care. And just all of these other costs, so we're the least, we have the least amount of money with the highest cost of living in the US.
CG-C: In my last 12 month plan I received 106,000 for core supports, or what Emily refers to here as caregiving. This money generates profit for all the support organizations in Australia, they will for example, often charge around $60 an hour and pay the support worker around 20. Which if you have been exposed to this industry and step back, you'll see there was a huge continuous boom in 2013. When the scheme was first introduced. This is another complex issue in itself, which will get a whole episode later on in this season of Divergent.
EB: Without a catheter paraplegic, or a person with any spinal cord injury who couldn't use their bladder would be dead within a few days. There's no other way of extracting your bladder and not can kill you. Same goes for the Roho cushion without a way of preventing pressure sores, you can get sores to your bone and they can kill you within a few weeks. So the importance of these items is extremely understated. And there's like a lot of ignorance, I don't think I don't think the US I don't think the healthcare industry, I don't think able bodied people really quite understand everything that goes into maintaining a disabled body. And getting financial support for them is pretty difficult. A Roho cushion is $500. So every time I pop one, I have to fundraise to get $500 for a new one, if it's no longer covered, so there's like a certain warranty for them. And I always hope that I pop them towards the end of a warranty like just before it's over. But it's it's a game, it's always it's always a fucked up game that you're playing, to have access to the things that you need to live here. All of these things are just like the most basic things, like you're saying that I need to exist on a daily basis or that other disabled people need to exist on a daily basis like I've been without CRPS treatment for two years now because Kaiser doesn't cover doesn't cover CRPS treatment at all. It's like not under their standard practices of care the treatment that I need, so they just don't offer it.
So it you're you're making you're going without often things that you also need to exist and much less being able to find accessible housing or transportation or caregiving. It's very, very hard to find caregiving when it comes to like my illness and my disability as far as like the bad days go and what that looks like. And I often wonder if I was like only more performative if I would be able to actually get the money I need for treatment for my CRPS, because I just see people who are able to get like over 100 $100,000 who have, you know, things that people have at least heard of before, I guess and that's great for them. It's just like there's it just creates like this kind of mentality of scarcity.
And almost the competitiveness within the disability community in the US that I think is really sick and like, and just the way that like, yeah, the way that capitalism bleeds into your, to your value of yourself when you have no other, especially when you have no other social systems that support you, is, you know, pretty devastating.
And, yeah, finding, finding support, to have access to all of these things is really, really difficult. And I'm really lucky to have a platform in which I can, like, fundraise for my lift, within a week. And yeah, I'm super lucky every day I wake up and I and I know that I'm super lucky, because I am also the one doing the caregiving for other people. And a lot of homeless people in LA are disabled. And it just feels like after being homeless in Chicago and LA for like, several months, because I couldn't find an affordable enough accessible place to live or some or a place where people would want to live with me because I would have to have roommates. You're like always scared to go back to that. And when you see houses, people who are disabled you understand why it's like so easy to become homeless when you're disabled. And if you don't have an address, they cut your benefits. And it's it's just like, it's ridiculous. And if you don't have access to catheters and Roho cushions, then you're you're dead. So it's, it's, you know, kind of depressing I hope things are getting better. I'm like really upset that we don't have Medicare for all yet in the US isn't something we definitely need, like health insurance companies are parasitic and deeply, deeply messed up the way that healthcare works in this system, I wouldn't call it healthcare, it's that is a comp that is not an accurate descriptor of what we have here.
CG-C: What Emily is saying here about being performative is somewhat relatable in my own experience of the NDIS, I could potentially be performative at NDIS reviews and planning meetings when the funding is allocated. But this performance, if it is that or was that which more often than not, it would not be, would need to be backed up by reports that have been funded through my plan for physio OT, or maybe a medical team. This process while occasionally falling short, kind of is aimed at eliminating any subjective element of how anyone is affected specifically by their disability so they get the appropriate funding. But a lot of the NDIS model is built around what they call goals.
In my first year of the NDIS, for me, part of the battle was just staying motivated. I'd been discharged from the hospital in my funded wheelchair, literally onto a hill in the suburbs of Newcastle. If somehow I managed to roll down this massive hill in the middle of the road because there wasn't any sidewalks. The bus stop was inaccessible. This city was two hours outside of anywhere I'd lived before. The only person I knew there was my mother and my stepfather and my funded support workers. Trying to see through the emotional fog that comes with this was a massive challenge in itself. But I spent a long time preparing for my NDIS review to pitch myself as an investment, where if most of the money went into physical training and not hospital physio, but training with things that were available, like an exercise physiologist or neuro physio, this would be a way out of needing long term funding. I explained how I had regained some functions so far contrary to my diagnosis. But this was extremely hard and not entirely how I felt. And also, I felt an unrealistic expectation for someone with a neuro psych assessment explaining how their brain injury would make it challenging to think critically about the situation and express that clearly. In this way, the responsibility does often fall on the individual to see through whatever trauma they might be experiencing. And sometimes what I feel is an unrealistic expectation to find a voice. When Emily and some of their friends do not receive enough government assistance for the needs of their disability in the US. they're forced to look to each other for support.
EB: I, I show up daily, and have been for years for people who need medications and there I wasn't calling it anything in particular the act of doing caregiving for myself friends and I go over a few times a week to my friend's house who's a quadriplegic, and I help her get dressed in and out of bed.
And, you know, eat and stuff like very basic, basic stuff. That's super easy. And I'm a paraplegic, helping a quadriplegic do that, because able bodied people can't show up and be reliable, it is so disheartening. And I started, I am recognizing now that like, I can't save everyone. And when I had Coronavirus in March, and I almost died, all I was worried about was people who didn't have the care that I had during that time. Or were houseless. And I am now facing an eviction because instead of focusing on solving problems within my own life, I have always put like, others needs first. And I started a mutual aid group. And as soon as I started facing a housing crisis, that all kind of fell apart, because I was doing like, all of the work for it. And when I was like, Okay, guys, you you work on it now, it just nothing was getting done or happening.
And I think mutual aid is a great idea and concept if it can actually be mutual, and if people can, are actually are actually really focused on changing the lives of other people in ways that are navic, like, accessible for everyone. We raised $5,000. And we're able to get some people help with mobility devices, get people medications, and then that ended due to infighting and, like very petty drama.
And which is a shame. And so now I just do like for my friend, Josh, a video of him getting brutalized by the police went viral. And I did a march for him and helped with fundraising for his wheelchair. So I'm just always doing stuff like that, because I really understand how difficult it is to access what you need. And with my friend who's a quadriplegic, like, you know, she shows up for me just as much as I show up for her and I'm not being paid or anything, but to live in a world in which your friend doesn't show up for you, when you can't physically leave your bed. And you can't get dressed on your own. That's not like a world I want to be living in. And oftentimes, it feels like the US really kind of you know, there wouldn't be another person she could call. And that's really, really, really depressing. The culture of care in the US is extremely lacking. And people are very much struggling who are able bodied, but also just, everyone's really uneducated. Everyone's really ablest and I am hoping things change. And we talk there's a lot of talk now about mutual aid and direct action. But I never see this being like applied effectively, to the needs of disabled people, because our needs are so great, not because people aren't showing up in the ways that they can, but there's not really a way that you can provide, like care four times a week via mutual aid service with a bunch of people who don't have experience, like I have more experience and most able bodied people with transfers, and with getting someone dressed, who has muscle spasms and who is paralyzed like I had to do that for myself. So she doesn't need to train me how to use a sliding board. And it's just really it's it's really depressing, honestly. But yeah, I do that when she needs whenever she needs help.
And most people are and she has money like it's not it's it's just like impossible to find she doesn't have like enough money to pay someone $25 an hour or to like pay extra for care but like she she isn't like in my situation at the very least and or in a lot of other people's situations. It's just the culture of care doesn't exist in the US like people are morally bankrupt or like not even like morally bankrupt. It's like even people who care are not are not competent enough to usually help disabled people because it requires like access, intimacy and common sense and problem solving. And oftentimes quadriplegics, and people with severe, you know, the most severe forms of disabilities and who need the most access to care also being deprived of that as well, she's had to sleep in her wheelchair sitting up all through the night. She's gotten pressure sores, she's almost died of pressure sores, she hasn't been able to use the restroom for several days, because there wasn't anyone to help her do those things because able bodied people who had a job to do didn't show up. So I think that should be like criminal, I think that there should be like a way to make sure that disabled people get the care that they need, but it is not incentivized here.
CG-C: For me, I often reflect upon my privileged experience as a walking paraplegic, and the complete invisible effects of my brain injury, or the term Emily has used in the past for this experience, 'able passing privilege', which I know some people don't like, but is a term I very much identify with. It gives the option of a place to hide in daily interactions with people away from any immediate prejudice or feeling them feeling entitled, asking very intimate questions.
EB: I think there's a lot of disabled people within media and culture that have invisible disabilities, who are very palatable for able bodied people because they look like able bodied people, and they're able to act like able bodied people. And they're able to performatively function within a celebrity status or within acting or a job in which they, they can have success. And they can, you know, get in and use the studios and they can get into the trailers and they and get their hair and makeup done. And as someone who has been in music videos, and had many shoots, and who has a audition for different things. Just being in a in a wheelchair is something that, that, uh, that I don't think any sort of studio is willing to deal with. Yet there we have, like, we have two actors with very visible disabilities, but still, the scripts written about people with disabilities are often just so cringe and like, not accurate to our experience or really inherently ableist.
Like, our culture is very, very, very shallow. And so people want the signifier of disability for the inclusiveness of it, and for the diversity of it, but they don't want to contend with disabled people who are, like, quote, unquote, 'too disabled' or 'unattractive'. And I've spoken to other like disability activists who might be older, or who are not models or whatever. And it's, it's very dehumanizing for other people, to, to not only be physically disabled, but not to feel desirable within our culture because of our standards of beauty. And I think that that is something that needs to change. And I know that it's like, a privilege I have with doing modeling and stuff like that, even though that's not what I look like on a daily basis. Like I always make jokes that I'm like, catfishing people, because on a daily basis, I don't wear any makeup and like I have acne and I you know, it's I'm wear like sweatshirts, and, like, athletic pants constantly. For me, it's like I can't even hide like, my disability at all to be hired. So it's not even a privilege I have of getting of getting work and proving that I can work despite my disability because the opportunity is not is not there.
And I think people really need to consider able passing privilege within the realms of of working and proximity to able bodied ness and having less access means that need to be accommodated because the people who,you know, it just really seems either you're inspirational and you're very visibly disabled and you're inspirational. And that is why you have a ton of followers because you make able bodied people feel good.
And at the same time, you're like trying to use that to raise money for your cause, right. And I see a lot of that, like for the most visibly disabled people that are influencers or that are famous, or you are, you know, you might have a cane or crutches or something, and you can you can navigate the built environment to a certain extent that requires less accommodations at the end of the day, and you're able to, and maybe your chronic illness does not impede you enough to work or you're forced to work. And you can still do that. Because your employer is not able to really discriminate against you as much based off of your disability because you don't need so many accommodations, and so you're safer. And then there's people who are in wheelchairs, and, like me, and my friends all get together. And you've got like six or seven people in wheelchairs in the room all talking about trying to find jobs, and it's just really, it's just really sad, and depressing. Like, the reality is, you're a slim, you're, you're very rare, if you can be employed with a disability, 80% of disabled people are unemployed. So it should not be like this, this norm. Because the built environment keeps you from being able to work and from being able to get to work and you're and the austerity placed upon disabled people to access caregiving keeps you from being able to work, and and also just discrimination. But across the board with fundraisers that I've seen, if you are, if you are able passing or if you don't have a mobility device, you get way more financial support. And I think maybe it's like, people with physical disabilities, it's like you're a lost cause, or like, you know, you're never going to be better. So maybe people aren't is willing to like invest in your future is something which is ridiculous.
CG-C: I mean, when I reflect upon these ideas, along with having access to the end is I have to say, I sometimes perceived myself getting preferential treatment. But in saying that, when, for example, I've been offered employment opportunities. In this one example, when the employer had I need to catheterized every hour and a half and can stand for super long or sit for very long, basically all the invisible needs of my paraplegia. The offer was ultimately withdrawn because they can't seem to connect how they perceive me with the reality of my disability.
EB: I do not think that it is possible to be palatable, if you only have access to the opportunities provided by the US benefit system. The US benefit system only is really messed up. People born with disabilities or who became disabled as teenagers do not have access to actual social security disability income, we are only on supplemental security income, which is at most $730 for the rest of our lives.
And I think for people with severe disabilities who need caregivers, it's not so much the $730. That's important. It's the health insurance and the caregiving and the access to caregiving that is important for us. At the end of the day, people think that we're just like, I even like other disabled people who don't need caregivers think that like, you know, this is an you're entitled, and it's like, who I don't know a single able bodied person who would be able to afford out of their own pocket $3,000 a month and caregiving even $2,500 a month in caregiving. That's like more than everyone I know's rent. I don't think the societal expectations of the US able bodied population are realistic for the financial support that is provided. I mean, there's like just not not nearly enough support for basic needs is is provided, if anyone was to become if any of my friends were to be in my situation tomorrow, none of them would be able to afford the wheelchair the the catheters, the roho cushion, the most like basic basic things and the caregiving they none of them would be able to afford any of it.
C-GC: All of the ideas and experiences Emily and I have given you here inform their activism, which seeks to not only bring attention to but motivate people to take action and acknowledge the severity of these barriers and experiences people with a disability might have.
EB: My activism is, is currently just what I do on a weekly basis to support other disabled people in my community that like my, that is like not really spoken about too much it definitely informs like the things I talk about on my Instagram and and the work I do there but my like, the most, the most work that I do is just for other people in my, in my immediate realm and then like my artwork is definitely a, I think a helpful definitely a helpful medium to really have able bodied people and even other disabled people who don't have the same lived experience as me understand just the oppressiveness of building standards and norms in the US and how the built environment is like extremely impressive. And being able to really hone that in and have able bodied people. And even like more mobile, disabled people really understand that I think is was super helpful. And to make it something that was worth writing about for a lot of different art platforms as well that this is like something that should be spoken about and something that shouldn't be that is something that is still like a of theoretical importance of, of conceptual importance and, and isn't just like art about identity politic, it's like, this is uh, this is something that can change. This isn't people's, like stigmas. This is the built environment is something that can change. And, you know, I don't think that disabled people should have to be likable for us to be given like basic human dignity and basic human rights. I think that no one, no one has won their freedoms with being like, likable. And we and I think we know that now. And I think that just this whole, like deserving of it's just ridiculous, like, no able bodied person would suddenly if every, if every able bodied person suddenly had to use a wheelchair, the entire world would look so different. And it would be normal, and it would be fine. I mean, and I think it's important to, to make this discussion of like disability theory, um, also by someone who uses mobility devices, like really, really important because a lot of people within the a lot of people, it's really, really interesting within the art world are kind of like, it almost feels like jealous that like wheelchair users are signifiers of disability, but they're also like, really unwilling to understand what it means to be in a wheelchair and have to use a wheelchair and that like wheelchair users didn't choose to be like the, the, the poster child and that we were just used to raise money because we were like the most pitiful form of disability basically. And it's not very like humanizing, or like cool at all, or even useful because it hasn't gotten wheelchair users any like sort of freedoms really like we have the ADA and it's unenforced, and we still can't use public transportation or get into most buildings. So it's just like really interesting. The people in the art world with disabilities who do not require as many accommodations and who are able to really go after grants or like the the, the opportunities that come out for disabled artists that aren't wheelchair accessible, which cater to people with less access needs, inherently because they're inaccessible Flux Factory had a residency program they were doing and it was not wheelchair accessible. And the residency program was for disabled artists so already, your canonizing and your ramifying the privileges of being in proximity to able bodied-ness and having more mobility than other disabled people and oftentimes I see just people who don't know what they're talking about.
And I say this as someone who is also chronically ill, as someone who is bed bound as someone who cannot function as someone who is relying on medications, and the healthcare system and who I have a deadly disease.
You know, I'm not talking from a place of just being a wheelchair user, like I'm talking from a place of also having chronic illnesses that are extremely debilitating. But I just would I find it odd how many people with disabilities are willing to talk about other disabilities that they know nothing about, and make assumptions about those disabilities, it's super weird. It's a really big problem. And it's just like, I would never speak for Indigenous or black disabled people within the disability community. That's, like, ridiculous. And I see stuff like that happening all the time, where people who are, who do not have a certain identity speaking for other people have that identity and it's very, very weird.
And the art world is is very much about having the diversity without doing any of the work. And so that caters to a certain group of disabled people that have less access needs. I'm currently I'm working on building out an RV to make it wheelchair accessible, and eventually turn it into an artist residency for wheelchair users, because those don't exist. But what I found is that like me being disabled, doing project management, within with contractors and builders has just been in kind of a really defeating experience. And I've been taken advantage, like just straight up scammed.
And then taken advantage of by other contractors. And so I'm hoping that I can find people in LA who are passionate about giving disabled people access and that and that think it's what we deserve. And it's not a luxury and just I've had, I've, I've had horrible things said to me about like 'my fancy RV', where I'm using the cheapest materials and the cheapest way of treating those materials as possible. And where people do not think that my my ability to use a kitchen is or should be necessary, or viable or valid. And it's just been really, really depressing, I'm having to deal with, with people who are not considerate of my chronic illness and like of my ability and levels while working on the project. And yeah, it'll get done. But it's interesting, because I was able to get a lot more help for making art than I was able to get. And I mean, obviously, the skill level is much different. But I was able to get a lot of support for helping make art but I was not able to get as much support for making this this rvn it just is kind of showing me how important it is to people for disabled people to have access and that it's not. So that's been kind of disheartening. Because I really think disabled people and wheelchair users deserve to have kitchens and bathrooms they can use and and laundry that they can use and and, you know, I don't think that we should be forced to have to pay someone $20. And it's really weird, because able bodied people who say that don't recognize it, it costs us like over $2,000 for people to do the things in our homes that we can't do because of the way that they're built. It's like so what is I would be saving $2,000 a month that could go to my CRPS treatment. It's like, just really bizarre how people think about access in the US and it's really disheartening. And I hope that I hope that the community can, I hope that people in LA I can somehow like get a team together that really is at least like passionate about about it. And I'm hoping that I can make it a possibility because I don't want to live in a world that I can't cut vegetables on the kitchen counter. I can't like turn around in the bathroom. And I can't get into the tub without assistance. I like you know it. It's It's It's not fun, especially when that is a possibility. And you know, every, every design change that we can make in a space for a disabled person gives them an immense amount of independence that they wouldn't otherwise have. And I don't think that there's anything you know, more valuable than that for people with disabilities and having a little bit of independence. And so I'm hoping that after I move, because I'm being evicted right now, I'll be able to have a lot more time and energy to find the right people to work on the project and for it to get it done. Because it Yeah, it's just been reinforced that that's like not of importance, and not something that people are willing to take seriously. And I hope we can change that. And yeah, I hope that more conversations like this can change can change that.
CG-C: There are so many barriers and some of them life threatening for someone with a disability in the US, particularly when it comes to items that are cost prohibitive, and yet fundamental to the survival and maintenance of a divergent body. Emily's experience contrasts my own experience in Australia as an NDIS participant with access to government funding for these items that keep me alive. Emily's story, though, isn't unique, and makes me think about what would be possible if there was a good level of care and support in the US to alleviate a lot of the trauma, money and energy that goes into maintaining a divergent body.
EB:I think so many incredible things would be possible if disabled and neurodivergent. The neurodivergent population had access to a good level of support. I mean, we would see, we would see disabled people, I think solving a lot of a lot of structural problems, I think we would see disabled people, more as teachers more as psychiatrists, we would have access to better care and disabled people would be able to be supported while giving that support to other disabled people. I think, I think if the US took on different different policy and got rid of austerity laws, the the advancements that would happen would be like incredible, I know that like it, they just really incentivize - The US government really incentivizes like not educating disabled people and poverty like you can get out of. If you become disabled in the US, you're able to get out of paying your student loans, but then you're never never able to go back to school and finish your degree without having to start paying those those loans again. So it really incentivizes this like anti intellectual ism, that's like a really big problem in the US.
CG-C: The juxtaposition of Emily and I's access to financial assistance through the benefit and support systems in Australia. alongside those available in the US, we can see a deep seated barrier beyond identity politics and the stereotypical understanding of disability as adversity. As Emily states, I don't think being disabled is inherently negative. I think that the world is completely built up against an in conflict with the disabled body, if you can financially manage to stay alive with a disability in the US, or even if you are financially supported to stay alive and access services in Australia, both experiences position the divergent body, as Emily says, in conflict with the built environment. Here, Emily points to a barrier. I and I'm sure many divergent bodies arrive at: Movement and our ability to occupy and move through and navigate the space around us. Maybe we have to learn to listen to a body that is divergent and explore different modalities of movement to try and resolve at least part of this barrier. Where do we get this education? Where do we learn to listen? In the next episode of divergent, I will explore this in much more depth. With Steph Behr and Theo St. Francis of Zebrafish Neuro, discussing their book 'From the Ground Up' a human powered framework for spinal cord injury. If you like what you've just heard, and want to check out more podcasts, head to Litmus dot Media and subscribe wherever you get your podcasts.