In the seventh episode of season two of Disability Bandwidth, we invite you to join us as we engage in a conversation with Julie Harris, a disability advocate, and a reasonable accommodations educator. We explore the fundamental human right of having your needs met and how it is significantly important for everyone. Moreover, we learn about Julie’s journey of relearning everything and becoming an expert in accommodations. Julie helps individuals and companies understand how to acquire and provide effective accommodations to people with disabilities.
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Transcript
[00:00:00] (Music)
[00:00:05] Nikki Nolan: Welcome to season two at Disability Bandwidth.
[00:00:12] Sam Proulx: A show where we talk with experts in disability about their journey, life and inspiration.
[00:00:16] Nikki Nolan: I’m Nikki Nolan.
[00:00:17] Sam Proulx: And I’m Sam Proulx.
[00:00:18] Let’s get started.
[00:00:19] Nikki Nolan: Would you mind introducing yourself?
[00:00:21] Juile Harris: My name is Julie Harris. Pronouns are she/her. I am a female presenting with dark brown hair, kind of curly wearing headphones and very messy, undone curls today. Rosy cheeks and a hoodie that’s kind of light pink, nude kind of color.
[00:00:42] Sam Proulx: I love that. Nude is a color. That’s a new one.
[00:00:44] Juile Harris: Nude for white. Very, very fair-skinned. Nude kind of color.
[00:00:52] Sam Proulx: Yeah. Yeah, exactly. It’s amazing as someone who’s sort of completely blind, how many value judgments are wrapped up in color, right? Whether it’s about race or ethnicity or value, or any number of these things. Anyway, that’s not what we’re here to talk about today.
[00:01:08] We’re here to learn about you and what you do and how you got there. So first of all, what’s your role? What do you do?
[00:01:16] Juile Harris: I kind of do what I want, when I want a kind of role, I do consulting. I work with companies, corporations, but also police, hospitals, schools, training on how to better interact and serve the disability community and corporations. How to go beyond just the bare minimum or at least even meet the bare minimum legal requirements, but also go beyond that to better support employees.
[00:01:44] And then I do some work with employees and provide support for them so that they can ask for accommodations, identify what accommodations they need, advocate for themselves confidently, and figure out/understand really what their rights are. And so kind of broad things. That’s overall though what I do.
[00:02:01] Sam Proulx: But I mean, all those things are so connected, aren’t they? In the kind of holistic view of what we need to do, to make accessibility happen really. Although I will say that it’s super interesting. So it sounds like you’re sort of more in the world of hands-on, practical physical accessibility rather than digital accessibility.
[00:02:23] Right?
[00:02:24] Juile Harris: That is correct.
[00:02:30] Sam Proulx: Do you notice a difference because I know a lot of corporations are focused on lawsuits and legal compliance and following the checklists and stuff. Is that the same for folks like the police or do you notice a different vibe when you’re working in the government industry, in the public service industry as opposed to the corporate industry?
[00:02:58] Juile Harris: I’m smiling and kind of chuckling a little bit as you ask that question because it’s such a good question. Really, really good points and shows anybody kind of with a lot of experience in the corporate world or in these things.
[00:03:14] I’m laughing because it’s such a good question, but it depends. It depends what hospital, what police force. It depends because some of it is risk aversion and how do we comply with the laws and summits? We’ve seen that this is a need and we don’t know how to meet it yet, and we see that we have a huge gap.
[00:03:36] So can you help us actually better serve the people that we serve?
[00:03:42] Sam Proulx: So just for the record, I am making the assumption, and I should not, that you are speaking from an American context, and that the organizations you work with are in the US right?
[00:03:53] Juile Harris: Police and hospitals and stuff? Yes. Some corporations I’ve worked with outside of the US that is obviously- I’m not a lawyer, so nothing that I say here or there is legal advice, but a lot of the laws even outside of the country are very similar to the laws in the United States when it comes to disability inclusion in the workplace.
[00:04:15] And the Americans with Disabilities Act. So a lot of processes that I implement are just as applicable in other countries.
[00:04:26] Sam Proulx: Yeah, of course, because once you figure out how to do it, it’s doing it right once we figure it out. Hopefully, it should be the same from country to country. Although of course, there are going to be cultural variations and such. What other countries have you worked in and have you noticed differences in the way that they approach these things or the way that they respond to training and such?
[00:04:49] Juile Harris: There’s some in Europe that are seemingly much more open and their companies are already much more adept at accepting or accommodating various needs, whether they’re disability needs or otherwise. So the work-life balance is a really big undertone that either hurts or helps the accommodation process.
[00:05:15] And here in the United States, work is a priority, even if you’re sick. You know, a lot of companies kind of expect you to work depending on how sick you are. And things like that where other companies, I mean other countries that I’ve worked with in Europe, Netherlands, Germany, Ireland, it’s a very different type of culture and days off aren’t frowned upon as I feel that they are in the United States.
[00:05:43] Sam Proulx: Right? And too often people don’t think about something like work-life balance as an accommodation, right? When you say to people “accommodations”, they’re thinking either screen readers or wheelchairs, right? That’s where they’re at. But as I want to do, I have taken us way off the script and dived right in because that seems to be my role being a force of chaos.
[00:06:06] No, I’m kidding. Nikki, why don’t I turn it over to you to actually bring us a little bit back onto our track.
[00:06:11] Nikki Nolan: I’m gonna bring us back. So I would love to know, what lights a fire in you? What gets you up in the morning and keeps you continuing to do this kind of work?
[00:06:20] Juile Harris: I live a fairly easy life and it took a while to get here and learn my needs and stuff, but helping other people who are disabled has as easy of a life as they can, and there’s some things that just can’t be taken out, but there’s a hell of a lot of things that can be. And so what gets me up is, just helping empower others and teaching them to advocate for themselves and believe that they deserve a life that others can have that maybe doesn’t seem attainable to them. But helping people believe that they can deserve it and attain it.
[00:06:59] Sam Proulx: You sort of said that about other people with a disability. So you identify yourself as a person with a disability and as part of this community, right?
[00:07:08] That is always interesting to me because the next thing that we are sort of gonna move into talking to is, what are the key moments that led you here?
[00:07:24] I think sometimes we get this assumption that, oh, well we as people with disabilities should be working in accessibility. We should have a passion for this. This should be our thing even though maybe like for some people with disabilities, it’s not. And that’s perfectly respectable.
[00:07:41] For you to be a person with a disability who’s not devoting your life to accessibility, that’s fine. And so I’m interested in sort of what moved you from just being a person with a disability, doing your own thing and making life better for yourself and kind of got you into doing this work full-time.
[00:08:04] Juile Harris: Recognizing from day one, when I get into the story, it’ll make sense, but from day one, obviously I had very, very clear privileges. But when I realized that the life that I live, as a person with a disability, is very, very much not the norm. But it can be and obviously not in every way because not everybody’s exactly who I am and not everybody has the exact family that I do and the exact situation that I do, but a lot of things can be.
[00:08:34] And so, that’s my driver, to make it not just go out and do program management, which is kind of what my brain naturally does. I could make a lot of money there, but am I ever really gonna feel fulfilled there if I see the vast difference in how the majority of people with disabilities are treated and the life that they live as opposed to mine? The answer’s no.
[00:09:01] So that’s why I’m in this.
[00:09:03] Sam Proulx: Maybe it’s a little bit about learning not to settle. Because in the community we tend to do that sometimes
[00:09:10] Juile Harris: Oh yes. And we think that we have to, and we’re told that we have to, and we’re told that we should be grateful for settling. And so it’s not even that we feel like we have to settle, but we’re told to. And we’re even told that if we don’t settle, we’re ungrateful, you know?
[00:09:22] Sam Proulx: Yeah, yeah. It’s so true.
[00:09:26] Nikki Nolan: Were there any books or media or events that really were pivotal for you or shaped any key moments that led you to here?
[00:09:35] Juile Harris: There’s a lot of books that I love and things like that, but the pivotal moment for me was I had a brain injury when I was 20. The brain injury resulted in me being in the hospital for a few months and doctors telling my family they’re not sure what the outcome will be.
[00:09:53] And then at the end, when the outcome looked more definite, saying that I would likely need 24 hour supervision. I had great insurance through my dad still at the time, so everything was covered. And if it wasn’t covered, I’m sure my dad would have paid for it. To this day, I don’t even know what he paid for, because it never fell on me.
[00:10:11] You know, the financial aspects of that never fell on me. After the brain injury, I had seizures that were a result from the brain injury. I forgot everything. So the whole first 20 years of my life, I forgot. I had to relearn how to walk, to read, to write the alphabet. I could say the alphabet backwards for some weird reason, cause our brains are weird, but I couldn’t say it forward and I couldn’t tie a letter to what it looked like in a book.
[00:10:35] I had to relearn how to sound words out. Also strange that I could read words and I could identify words if I had already learned them before. So it was a very, very weird word thing. After that brain injury, instead of needing 24 hour care from nurses and things like that, I got it from my family because two parents who were still together and one who made enough money and had great insurance and one who stayed at home. Then a lot of siblings who were older than me, who I could stay at their house as well and they could provide care for me.
[00:11:10] So during that time, I would go between one sister for two days, another sister’s house for two days, and then my parents’ house for three days and do that cycle every week for, I don’t know, six to eight months or so. And this was the most empowering time because my needs were what mattered the most.
[00:11:26] If I needed the lights off because my head hurt, I got the lights off because my head hurt. If I needed people to stop talking because it was too loud, they stopped talking because it was too loud. If I needed medicine, I got medicine. If I needed certain food, I got certain food. I couldn’t taste so I went by the texture and how things felt in my body, but I got whatever I asked for.
[00:11:42] And to me, that’s so normal, you know? It’s so normal to get my needs met because my family wanted me to be the best that I could be. They’re happy that I’m alive at this point, and so they wanted me to have the best that I could. Nobody told me no, that need doesn’t matter. No, you don’t actually need that food.
[00:11:58] No, you don’t actually need the light off. No, you don’t actually need to go to this place right now. I would even just tell people to leave the room, you know? No, I don’t want you in here. I need you to leave the room. And nobody questioned it. So I got my needs met without question.
[00:12:12] My family supported me to be whoever I wanted to be. And again, to them it’s just, they’re grateful that I’m even alive, but nobody knew what my future would look like. Later I learned that it’s very, very obvious that people are taught to not listen to their needs as children, especially people with disabilities.
[00:12:33] And their needs don’t matter unless it’s a life risking kind of need. Especially people who are neurodiverse or who have even physical disabilities that are apparent. If your need isn’t obvious, then you learn to shut it down.
[00:12:51] You learn to keep it quiet. You learn to figure it out on your own. You learn to not say it because other people are either gonna tell you that it’s not real or they’re gonna judge you for it, or they’re gonna see you as needy for it. And I was never seen as any of those things. And if I was, my family didn’t let it on.
[00:13:05] I never felt bad after my brain injury. I never felt like I didn’t deserve to feel comfortable. I never felt like I didn’t deserve to have my needs met. And quite frankly, it gave me this entitlement to getting my needs met, which I think everyone deserves. Everyone should feel entitled to get their needs met because then they speak it. They’re more assertive in confident ways, okay, and if you don’t meet my needs, then I’m just gonna leave, or I’m gonna figure out something else because this is all right.
[00:13:32] Anyway, that’s more than books or movies or anything. It was that experience
[00:13:37] Sam Proulx: It’s so interesting in a few ways. I mean, first of all, as you’re saying these things, it also occurs to me, how do we define need? There seems to be this idea that like, oh, well if you’re eating regularly and not actively dying, then your needs have been met.
[00:14:01] But we need pleasure and friendship and entertainment and love and all of these other things. When you’re thinking about this, how do you define need?
[00:14:16] Juile Harris: That’s a really good question, and it’s something that I work with individuals on. And it’s different for every person, but this is a really interesting specific question because I guess an absolute need are those things that just keep you alive and keep you functioning as a human. But I would define, I would go further to say that a need is anything to keep you functioning at your best, at your optimal.
[00:14:43] And anything that does that is a need for me. And I think that everyone should view it that way. And as long as it doesn’t hurt others, which I don’t think any need does hurt others, but sometimes, I mean, maybe it’ll hurt somebody’s feelings, but that’s not the same, you know?
[00:15:01] But obviously with that caveat and if it is gonna affect others, then thinking about how to get both needs met at the same time. But I think a need is anything that helps you to be your best self functioning at your best, your body function, your body, your brain, everything functioning at its best.
[00:15:18] Sam Proulx: Yeah, I just wanted to focus on that. Because I think there has been a sort of moving of the road markers. In the disability community where need literally is defined as just the thing that keeps you living in some cases. The second thing that really resonated with me as you’re telling that story is the family support.
[00:15:41] I also come from that privilege of two parents together and myself being blind and my father also being blind. I got to have a role model who got it and I mean, look at where I am today. I’m sure you thought about how not everybody has that privilege of an incredible family.
[00:16:03] How do we build a society that can make it easier for folks to be on equal footing if they didn’t have some of the greatest families in the world and some friends and that kind of help as they started their journey.
[00:16:24] Juile Harris: Such a good question. And this one is one of those that could, if we got the whole world to think about this question and the answer and how to best implement it, then the world would be so different for the disabled community, but also just for everyone in general. But I think that it’s to stop seeing needs tied to disability as special needs because they’re not. They’re human needs.
[00:16:47] Every human has different needs. It’s just that we’re getting our needs met in different ways and just because I have a friend whose food goes through her stomach, you know, goes directly through a tube in her stomach. She still needs food. It’s not a special need. She needs food. She just takes it in a different way.
[00:17:05] So, the manner of getting that need met may be unique, but needs in and of themselves are not special, you know? And so, it’s frustrating. I think if we get rid of all of these terms that make people feel more comfortable talking about people with disabilities and getting their needs met, like special needs and things like that.
[00:17:26] First, getting rid of that because they’re not freaking special. Stop seeing us as different. Stop acting like our needs are different from your needs. They’re not, they’re the same needs being met in different ways. But even then being met in different ways, look at five people who don’t have disabilities and they’re getting their needs met anyway, differently.
[00:17:46] So maybe not with a tube in their stomach, but they’re still choosing to eat differently. I could go on that for a while, I will stop myself.
[00:17:56] Sam Proulx: Isn’t it interesting that somebody who has a food allergy or loathes the taste of cabbage isn’t referred to as having a special need?
[00:18:06] Juile Harris: Or somebody who likes to use a fork rather than a spoon or never eats soup, and they only like to eat certain things. All of those things that we accommodate with no problem. We just say, oh, that’s a little bit quirky, and then we move on from it, you know?
[00:18:19] Nikki Nolan: Hmm.
[00:18:20] Sam Proulx: Right. Or cultural things. In different cultures, you live with your family for longer, you do things differently, or you use chopsticks. It’s just interesting that all the disability needs are special. It’s also interesting that when you start talking about these things and advocating for these things and working in this area, the reactions to you and the experiences that you have can be pretty different.
[00:18:39] Nikki, I’m trying to segue us into part two here. Why don’t I lay you up?
[00:18:43] Nikki Nolan: I would love to know what outcomes you’ve experienced, in exploring and talking about disability?
[00:18:49] Juile Harris: That’s interesting. There’s outcomes for myself and outcomes for others. So right after my brain injury, I didn’t realize that I was different because I wasn’t treated differently from my family. So I knew, well, okay. I knew that I was different when I was in rehab because people paid different attention to me than they paid to others, you know?
[00:19:10] And obviously I was different, but my family never treated me differently in like the less than, or you can’t accomplish as much kind of way. They never made me feel like I was really different from anybody else my age. So I went to college. My family, my parents were incredibly supportive even though I was having a lot of seizures at the time and it could have been very scary and I think most parents wouldn’t have allowed their kid because it was too high of a risk.
[00:19:35] They let me go to college in a different state. It was one of the scariest times of their life, they had a lot of kids. They say it was one of the scariest times, but they let me freaking do it. And I think that’s something else. Stop treating people with disabilities, completely based on risk.
[00:19:48] That’s a little bit of a side note, but, dang, what was the question? Oh, outcomes. So also, okay, another side note. I didn’t say any of this, but after the brain injury and seizures, we also found a hole in my heart. I had heart surgery. I’ve had back surgery because of things that I was born with that we didn’t discover until after the brain injury.
[00:20:07] I am also autistic and obviously born with and didn’t realize because my family just accepted all of us. That was a random side note, but just so that people know who, who is talking. What outcomes have I experienced in explaining my disability? When I went to college, people just accepted me and I didn’t realize that they were treating me differently because I was so confident in who I was.
[00:20:32] I didn’t even know that I needed to talk about disability in a special way. And I didn’t. I didn’t claim myself as disabled at the time. I had seizures. Sure. But that did not mean that I was disabled. I wouldn’t claim it if somebody said that I would, I would deny no, I’m not disabled.
[00:20:46] IObviously that’s not true. You know? I was very obviously, disabled. Both by medical ways and socially. So anyway, I was so confident and then as time went by, I realized, oh, people are treating me differently. I guess I should start being weird. And then you get into like the masking and stuff.
[00:21:09] But then I started having less real friendships and I started having less people accept me for who I really was because I would just be a novelty at first. And then six months later when they started realizing, okay, well this never really fades. This is true. Then they wouldn’t even like me where that never happened at the beginning when I was just confidently who I was.
[00:21:25] And so it’s really interesting to have the experience start when you’re 20 years old or 21 years old already. You have a higher comprehension than like a two-year-old going through the same kind of experiences of learning. Oh, I have to be this certain way in certain times.
[00:21:41] And I have to say please and thank you at these times. And I have to not touch people’s things in these situations and I’m learning all of those things. But as a 20 year old and all of the masking and hiding disabilities and things like that came in a few years later. And all of this is me kind of returning back to who I was right after the brain injury and saying screw this.
[00:22:01] I had the best life. I had the best friends. I had people accept me the most. I had people support me the most when I was unapologetically myself, because I didn’t know it should have been hidden because it shouldn’t be hidden, you know? And so the outcome that I’ve experienced is confidence. Also helping other people be confident in who they are.
[00:22:19] And I always thought that it was a side effect of autism to be really confident and unapologetically who you are and not caring. And I have learned that it’s very much not the case. For some people it can be that way, but for very many it’s the exact opposite. And kind of a big lack of confidence and anxiety around human interactions.
[00:22:41] So I learned that’s not just a side effect of autism, that’s a side effect of how I was raised and how I was accepted. I want to give that to other people.
[00:22:50] Nikki Nolan: I’m just really curious because I had something really similar when I was younger. I was unapologetically myself and constantly the world was like, stop being this. But I was doing fine.
[00:23:04] It wasn’t until I started like trying to mask and starting to fit in and trying to be more like people that I lost my confidence that I lost my ability to speak up for what my needs were. Now I’m doing something similar to you trying to come full circle, reiterate what my needs are and what’s important.
[00:23:23] So that I can be as successful and as vibrant and confident as I used to be before I started masking to fit in.
[00:23:31] Juile Harris: Yes.
[00:23:31] Nikki Nolan: It’s hard. It’s so hard. So Sam, do you have anything? I wanna make sure that I didn’t cut you off.
[00:23:37] Sam Proulx: I’ve just been thinking about that and it’s the old fallacy that, right, we should try to fit in and appeal to everyone as opposed to just be who we are and be best friends with the seven people who really fit with us. I think there’s something there, but obviously it’s not the experience that I’m gonna have because I don’t really have the option to- I mean, I guess I could decide not to use a cane, but then the walking into walls would make it pretty obvious.
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[00:24:05] Nikki Nolan: And before we get to our next question, we’re gonna hear from our sponsor.
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[00:25:05] Nikki Nolan: And we’re back.
[00:25:06] Sam Proulx: That really brings us into the next question, which is around community. You eventually came to accept your identity as a person with a disability and identify as disabled and realize that’s not something to fight against or be ashamed of or a bad word. There’s community in that. Did you feel like you found your people and joined a community, or did you feel like you had to build a space for yourself from the ground up? What was that sort of process like?
[00:25:47] Juile Harris: That is another really good question. I think that I had to build it from the ground up. For me, the disabled community actually has not been as welcoming as I would’ve thought as it is for some other people.
[00:26:02] And for me, I have not found as much acceptance. And I think a lot of it is because of no fault to anybody really. We’re all trying to find our space and where we fit. And a lot of that is coming up with defining how I fit in the disabled community. This is my experience and forgetting that other people can have equally valid but opposite experiences, you know?
[00:26:28] And you kind of just alluded to one, which is apparent disabilities and non apparent disabilities. And I can hide mine if I want. I don’t have to say that I’m disabled. I don’t have to say that I have seizures. I’m a little bit weird, but people are not gonna think, oh disabled.
[00:26:46] Some people obviously, if you’re blind, if you’re in a wheelchair, if you have a limb difference. There are a lot of things that you can’t hide. So then I see that and I’ve had some people not as welcoming because I’m not visibly disabled. But then I see people who are non visibly disabled be not as welcoming to people who are.
[00:27:12] And so I think it’s silly because while that’s hard for me I might have to prove that I actually have the needs that I have. Because a lot of people don’t believe that I’m disabled when I go with my service dog to a store, you know? And I look completely capable and they’re denying it and I have to prove my need.
[00:27:30] But when I talk to people who have very visible disabilities, they’re trying to prove their capabilities, so I’m trying to prove that I actually have valid needs. And then where it’s visible, they’re trying to prove that they actually have capabilities and are intelligent, or are capable or can function on their own in ways that people assume.
[00:27:55] And so they might be different, but one is not better than the other. One is not worse than the other. And so that’s one example. But in the autistic community, I haven’t found a lot. I have on LinkedIn. I have a lot of really good connections. We have really good conversations.
[00:28:13] And on LinkedIn I do, but when it comes to real life, I find that either my brand of autism is too much for other autistic people where I’ve literally been told that I’m dramatizing certain of my autistic characteristics to seem more autistic. And just because it’s more than theirs is in that way, and it’s not faking at all.
[00:28:38] And I’m getting so uncomfortable even talking about this because of this I don’t like saying that it was unwelcome for me because I know that it’s such a welcoming community for a lot of people. But this is my experience and this is also a big reason why on LinkedIn sometimes you’ll see me talk about why neurodivergence is not just autism and ADHD and the digestible versions of it.
[00:29:02] It’s not even just the pretty sides of autism. There’s meltdowns and there’s big things that somebody who’s autistic can have something that’s a really negative thing that is directly because of their autism. But we don’t talk about that. And if I do, then oh, you’re wrong for painting people with autism in this way.
[00:29:21] And I was like, I’m not painting them this way, I’m just speaking about one aspect of it. But get kind of shut down for talking. I don’t know. I think every community can be non-welcoming in certain ways, and the disability community is no different.
[00:29:36] Nikki Nolan: Mmm hmm.
[00:29:37] Sam Proulx: There’s the idea that whether you’re blind or autistic, you’re supposed to be inspiring. Do you think some of it comes out of fear? It’s interesting how much this episode has focused around needs. But the thing that I’ve noticed and I wonder if it accords with your experiences, is when you, as a person with a disability, meet someone with needs different than yours, sometimes you can become afraid that like, oh, if the limited accessibility resources are spent meeting their needs, then my needs won’t be met?
[00:30:10] Sometimes we get sold into this sort of fake we can’t all have our needs met, and so the pie has to be divided. Sometimes that feels like it’s a force at play for me. Is that something you’ve experienced?
[00:30:27] Juile Harris: I have been nodding the entire time while you’ve been talking because yes, I absolutely agree with that. It’s obviously there. It’s not the one reason, not only one reason for anything and especially this, but I do think that it’s a very big one. Okay, two things.
[00:30:46] One, specifically the autism community and/or neurodivergent or anything like that. A lot of times there’s people who say, well, obviously you have a high paying job. I’ve done well in the corporate world. I’ve been paid very well. And they’re like, obviously if you could do that, then you don’t need a lot of.
[00:31:01] What they have no idea is that, the more that I mask, the more seizures that I have at night because of the stress that it puts on my body. When I have seizures, I pee my bed, and then I have to clean my bed, and that puts more stress. And then on a brain that already can’t handle a whole lot as other people can’t.
[00:31:17] And now you’re adding tasks like cleaning your bed, washing your sheets regularly because you had a seizure last night. And all of these things that people don’t think about. I’m very, very privileged because my autistic traits are such that they’re very beneficial in the corporate world and not everybody’s are.
[00:31:43] And so I am very privileged in that way, but it doesn’t mean that there are negative things too that are any less hard for me or even equally hard. And maybe in some ways they’re more hard but we’re not comparing. And if we’re comparing, that’s already wrong. But also outside of just the neurodivergent piece, I once went with my mom to a concert. I think like last year it was outdoors.
[00:32:02] I hadn’t been to a concert in years because of loud sounds, light seizures. I haven’t gone, but I love concerts. It was outdoors, it was a couple hours away from where my parents live and I was gonna go. I was visiting them at the time, so I was gonna go with her and scope out the outdoor space first.
[00:32:23] And I get so excited when I see ADA seating. I get so excited when I see seating specifically for people with disabilities. So I sit there and I have my dog. He’s not in a service vest or anything. It’s really, really hot. It was summer. He’s a big dog. I don’t make him wear it.
[00:32:41] It’s not required in the United States to have it. I don’t make him wear it in these kinds of situations when he’s gonna be outside and hot. Anyway, he wasn’t wearing it. He doesn’t have to, but I was approached and the guy was like you can’t sit here. And I said, oh well, I see it’s ADA seating.
[00:32:56] I am disabled. And he is like, no, it’s just for if you’re in a wheelchair. Here’s where this is wheelchair seating and we’re gonna have interpreters up here. And I was like, well, I may not be in a wheelchair but it’s ADA seating and that includes me. We go back and forth for a while anyway.
[00:33:17] But then I just get so frustrated that I leave, I go back to the hotel where my mom was. I was in tears and I was like I’m ready to go. And she’s like, no, Julie, we’re not going. You’re so excited about this. Because she knew how excited I was to go to this. I’m a grown ass woman, I’m like 30 years old, ready to do this.
[00:33:35] And I’m just like, nope, I don’t want to. What does my mom do? I’m a grown woman, but my mom, and this isn’t even normal for her, but she goes and she advocates for me to this guy. And she’s like, where was it? Then she called me a little bit later and I was like, I don’t care mom.
[00:33:49] You can do whatever you want, but I’m not going. I’m not going, I don’t wanna put up with this. I don’t want to deal with it. I’m sick of advocating for myself. Because sometimes it’s just exhausting. It’s not that you’re giving up, but you just need to take a break from it. And so she calls me and she says, okay, it’s okay.
[00:34:02] You can sit here, you know they’re not gonna do anything wrong. We can all sit here, come back. So anyway, I ended up going there and it was fine and they apologized to me. She was like, I told them they had to apologize to you, they better come back and say they’re sorry for how they treated you.
[00:34:19] And then they came and said we didn’t realize any of this. This will help us make a lot of our processes better. We’re so grateful that you did this and we’re so happy to learn. But what people don’t realize is that comes at the expense of me and my mental health.
[00:34:33] Okay, that’s a little bit off topic. So why I said this is because, if I were to sit on the grass with everybody else, what if I had a seizure in the middle of it? It would’ve been really disruptive. It would’ve been unsafe for me. It would’ve been unsafe for others. A lot of bad things could have happened if I was in the middle and had a seizure there, you know?
[00:34:51] Or if I needed to leave and I wasn’t allowed to leave. All different reasons. It was a safer place where I could easily leave if I needed to, where people could easily get to me if they needed to.
[00:35:11] It was a much better situation, but because I wasn’t visibly disabled and specifically in these ways, blind or in a wheelchair. I was viewed as unworthy. My needs were not worthy of getting met in this way.
[00:35:27] Sam Proulx: It seemed like they were afraid that like, oh, well she’s here. Then someone with a wheelchair won’t be able to be here.
[00:35:32] Juile Harris: Yep and my answer to that was well then get more spaces. This isn’t my problem. You figure out more spaces. We’re outdoors.
[00:35:40] Nikki Nolan: Mm-hmm.
[00:35:42] Sam Proulx: Yeah. Right. It almost never happens either.
[00:35:46] Juile Harris: Right.
[00:35:48] Sam Proulx: I mean, the way it works in Canada is I have a handicapped parking permit that I carry along with me. And when someone’s driving me, they park handicapped because I have a cane and I can’t walk independently across the parking lot.
[00:35:59] It’s not safe, it’s not light controlled. But I get so much crap for parking in those spots because they’re the wide spots that have the lift right for the wheelchairs. And like I have never in my life, as far as I’m aware, parked somewhere and had a person with a wheelchair need to be there and I was like taking up the space because there’s not.
[00:36:20] I don’t know. It’s just interesting.
[00:36:21] Nikki Nolan: It’s hard. This is why we shouldn’t have such a scarcity situation. Why should we all have to fight for our needs so hard? How do we build this world in which we don’t have to all be fighting for resources?
[00:36:46] Juile Harris: I think viewing it as yes, we’re fighting for resources, but most of the time we’re not. And that’s something that we’ve been told. I think most of the time we are not, there’s always other solutions. And so even if a resource isn’t created right now to accommodate another person in a wheelchair or something, well then we’ll freaking figure something out.
[00:37:07] We can, in that moment, figure something out. And a lot of times if we can’t in that moment and it’ll be the next moment, but we can learn. But a lot of times it’s not as scarce as we think, except people’s willingness to provide and fulfill the need, the scarcity. That’s what the real scarcity is, people being willing to fulfill the need and meet the need.
[00:37:28] Sam Proulx: Yeah, exactly. So I mean, maybe the ultimate question is how do we convince the wider disability community to fight together instead of fighting each other?
[00:37:42] Juile Harris: Yes. exactly.
[00:37:45] Nikki Nolan: Yeah.
[00:37:47] Juile Harris: That’s a huge thing that I’ve, that I’ve realized. I mostly live on LinkedIn and have some real world things, but most of my interactions are on LinkedIn. But that is something that I talk about not a whole lot because it’s not my biggest focus, but I do sometimes I feel really inclined to focus on that.
[00:38:05] And why are we fighting against each other? Why are we not supporting other groups? I am fair-skinned white. I have that privilege. There’s a lot of autism that’s completely focused on that. But there are black women who are autistic. There are so many other people who are autistic who don’t have as much publicity as we do.
[00:38:36] Nikki Nolan: I would love to transition us along your journey, has there been anything you’ve discovered that’s surprised you?
[00:38:43] Juile Harris: I think probably the biggest thing that surprised me was that I thought that I needed to change for the world when right after my brain injury was the most accepted I’ve ever been, ever. And still to this day, I would say are some of my favorite friends, my favorite relationships, my favorite experiences.
[00:39:01] That’s when my specific brand of disabilities was the worst. I was having more seizures than ever. And it’s funny that sometimes we can let insecurities or some of the negatives cloud a lot of the great things that are happening. What I learned is that I’m more accepted by not masking.
[00:39:25] I’m more accepted by not hiding who I am. I’m more accepted by being unapologetically me. And sure some people are going to not like it, but it just matters so much less when you’re not trying to make them like you. And there are people who do like you. It was probably the most surprising, except why was it even surprising?
[00:39:47] Because it was evident right there at the beginning, but you know, still surprising somehow.
[00:39:52] Nikki Nolan: It’s really interesting you talk about being in the hospital as the most calm and in control of my life. The biggest time that I ever learned was when I was in a wheelchair for four months, and pretty much confined to bed. People would ask what I needed, but I was able to just read books and have no pressure on me to do a bunch of things that I didn’t realize, like build up these external pressures of presenting yourself this way. Do this thing.
[00:40:21] Not having to make any excuses for anything and just being able to do what I want was like literally the biggest time of growth in my entire life was those four months. Just being able to read what I want, learn about what I want, have enough time and space, and this is pre smartphones and Netflix when this happened.
[00:40:42] And so I just had an unencumbered time to read. I read my books on tape. So I went to the library and got like a ton of books on tape. It’s fascinating because I feel like I’m just seeking that now. How do I find this time and space to get back to that moment? I just took us way off topic,
[00:41:04] Sam Proulx: Now you’ve made me super interested and as somebody who, despite being blind is very neurotypical. It’s interesting that you mentioned that it was before smartphones. Have we broken the world in a way? Julia, I know you said you live on LinkedIn. If you were sick in bed every day today, would you still be expected to be on your smartphone and on LinkedIn and on the internet? Feeling and doing that pressure in a way that maybe 20 years ago wasn’t a thing. The smartphones have made things so much better because I have a screenwriter now, but sometimes I wonder, have we made things worse for some disabilities with the advent of technology? I don’t know.
[00:42:03] Juile Harris: I think that it’s the increased expectations on humanity and on others that has changed it more than the technology itself. Because technology isn’t as enabling as anything that we’ve ever had in the world. You know? However, does it come with increased expectations? Like when I text you, I expect you to respond.
[00:42:24] I saw you posting on LinkedIn. Do I expect you to be there every day? But here is the key I think to individuals, disabled or not, but especially people with disabilities who already have a higher drive to do more in life. Just to live. I think that it’s not allowing other people’s expectations to become your own expectations of yourself and not letting other people’s expectations become what you judge yourself by and how. I don’t post on LinkedIn every day.
[00:42:55] Sometimes I can for three weeks straight, and then sometimes I go three weeks straight without posting at all. And guess what? Nothing bad happens. And some people might judge me for it. I don’t know. I genuinely don’t know though, because I don’t care and I don’t allow it into my space.
[00:43:09] And if it comes and if somebody makes a comment about it, I just say, oh yeah, well I didn’t feel like it. That’s a good enough answer. I think at the beginning, I don’t remember what I was answering, but I do what I want, when I want, and that’s what I do. And that’s true for almost anything.
[00:43:25] And that’s my answer, almost anything. And I wish that everyone could kind of get freedom in their mind to just say, well, cause I didn’t want to, or because I did want to. And let that be enough and not let society’s expectations and the expectations that come with more technology. Well, you have more technology now. You should be able to do more.
[00:43:42] Well, you have the screen reader. Nothing should be holding you back. Why aren’t you just as fast as everyone else? Why are you faster? Why are you slower today than you were yesterday? Is your whatever working still? It’s not all about technology, and just because we have working technology doesn’t mean we have to still be. We’re not robots, just because our technology is.
[00:44:04] Sam Proulx: Yeah. And maybe even learning to fight back against the expectations of the technology itself, right?
[00:44:11] Juile Harris: Yes. Oh yes.
[00:44:13] Nikki Nolan: I think that’s such a good call out about an increase of expectations. I haven’t really heard it framed that way, but I really relate to what you’re saying. I think that’s why I felt so relieved while I was in bed reading that the expectations were gone. It really was. The removal of expectations.
[00:44:33] So we’re coming really close to the end. This has been so wonderful to talk with you, Julie. So I would love to learn what you feel are some small ways people can start towards a path of inclusion, accessibility, furthering the rights of people with disabilities and so on?
[00:44:48] Juile Harris: Like much of the focus of this episode needs, I think so much starts with needs and accepting people’s needs. Whether you understand them or not, and accepting people’s needs and filling them in ways that you can. Whether you think they’re valid or not, it’s not your place to think they’re valid or not. Personally think that if that changes, then so many things just fall in place after that. Whether you just accept people’s needs for what they are and fulfill them.
[00:45:18] Then obviously the bare minimum, keep being in legal compliance at the very bare minimum. But pay attention to people’s needs and just grant them.
[00:45:28] Sam Proulx: Yeah. Yeah, absolutely. As we move toward the end, if folks need or want to find you, where can they find you and keep up with what you’re doing? And is there anything you would like to plug?
[00:45:41] Juile Harris: Back to the previous question really fast. Also, I find that people are able to better respect other people’s needs when they start respecting their own needs. I know probably your whole life you’ve been told, you can’t need this. You’re too needy for needing this. You shouldn’t ask for this.
[00:45:58] Do you really need it this time? You were okay yesterday. Why do you need it today? And you learned to not even respect your own needs. So I guess really the first step is to respect your own needs, identify your own needs, give yourself your own needs, advocate for your own needs, and then you’ll start doing that to others, naturally.
[00:46:14] But also you can start focusing more on that and then that kind of goes into what I do and how I support individuals. I have a program that helps you learn how to identify your needs and some people’s needs are very obvious and they’ve known ’em since birth. Somehow they need to get their needs met.
[00:46:35] They haven’t identified that necessarily, so I help with that. You can find me on LinkedIn. Maybe I should have come prepared with my URL and stuff, but it’s just if you search “Julie Harris disability” on LinkedIn, I’m pretty sure that I’ll pop up and be the first one.
[00:46:51] Sam Proulx: We will get it in the show notes.
[00:46:53] Juile Harris: Okay, thanks.
[00:46:54] Nikki Nolan: Thank you so much for being here. This was so awesome talking to you.
[00:46:56] Juile Harris: Thank you so much for having me.
[00:46:59] Sam Proulx: Thanks for listening to Disability Bandwidth. If you liked this episode of Disability Bandwidth, please subscribe and share it with friends and family. Today’s episode was hosted by Sam Proulx and Nikki Nolan. Edited and produced by Nikki Nolan. Transcripts are written by Emma Klauber.
Music is created by Efe Akeman. Special thanks to everyone at Fable who without their support, this show would not be possible. You can find out more about Disability Bandwidth on Twitter and Instagram @disabilitybandwidth, or on our website at www.disabilitybandwidth.com.
[00:53:04] Music
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