KC and Jamil discuss the complexities of being disabled in higher education by virtue of identity, visible and invisible disabilities, accessibility, and perceptions, featuring guests Sarah Rizzuto and Aura Fortier.
You can listen to/read some of Aura’s work here: The Illusive Men (https://youtube.com/channel/UCEqnBYms–G9c5uXPQdPItg), Recusant’s Sigil (https://youtube.com/channel/UCjMoinzM5Eoo0G2loLA5Vyw), and Forever Intertwined (https://www.amazon.com/Forever-Intertwined-Aura-Fortier-ebook/dp/B08HQZZG6P/ref=sr_1_1?dchild=1&keywords=9781098322496&qid=1601916276&sr=8-1)
Transcript
Hello KC. So, once again, we are back, having another conversation that
Speaker:has been on our list for quite some time. We are. I feel like we're playing
Speaker:catch up. True. We do have such a long list, so I was
Speaker:thinking about the podcast, and some goals, some vision for what we might
Speaker:be, what I'm hoping that we create. So follow me here,
Speaker:I wanna see what you think about this. Of course. So
Speaker:you know how sometimes people have to have an experience of something themselves
Speaker:to understand something or to be an advocate or to be some kind
Speaker:of ally, or even to just believe something exists, like COVID.
Speaker:Some people not believing COVID exists and they get COVID and
Speaker:now they understand that it's real. You don't believe in something... Or
Speaker:someone they know. Right. And I think that's true for a lot of
Speaker:things. I think that's true for, certainly, I've experienced that around
Speaker:transness. It's like if I'm the first person someone's meeting, all of a
Speaker:sudden my people see like, "Oh wow, look at all these ways that
Speaker:the world is set up, but it's hard for trans people.
Speaker:I didn't know that until I met you."
Speaker:So here's what I'm thinking, what my hope is, with the podcast is
Speaker:that people get to know us and they
Speaker:listen in on these conversations, and even if
Speaker:the podcast gets to do that, like the podcast
Speaker:is the friend or the experience that they have, that has them see
Speaker:the world differently and make some kind of change.
Speaker:Yes, it's also exposure, which I think we are getting at here,
Speaker:providing folks that maybe in their own ordinary lives do not get the
Speaker:chance to interact with folks from different cultures, different backgrounds,
Speaker:different experiences from them. So, they may only hear about a particular
Speaker:kind of person, from stories they read, from
Speaker:experiences from third party folks. So, hopefully, we are providing a place
Speaker:where people can hear first hand account of what is it like to
Speaker:have a certain experience in today's society and also in higher ed?
Speaker:Yes, absolutely. Okay, loving it. Great, so that was, really I think that's
Speaker:what we're about, and for some reason, I hadn't actually thought about it
Speaker:in those terms until this morning, but here, for this conversation,
Speaker:today we're talking about disability, today we're talking about access.
Speaker:Well, we're talking about lots of things. We have two amazing guests with
Speaker:us artists, both of them, poets, we're gonna hear some poetry from them.
Speaker:We have Aura Fortier who is a poet, a lyricist, a singer,
Speaker:she's here in Milford, Connecticut, and we have Sarah Rizzuto who is an
Speaker:MFA, she's at MFA at Southern and has taught, does teach disability studies,
Speaker:poetry, creative writing, and she's an advocate. So both of them are here
Speaker:with us today for this conversation. Welcome, thank you for being here.
Speaker:Thank you for having me. Truly glad. Thank you. Yeah, so exciting.
Speaker:I've been dying all week to have this conversation and welcome you two back
Speaker:so this is really exciting for me personally. Thank you. Thank you.
Speaker:Very appreciated. So one thing that... A place
Speaker:that I think we should start this conversation is that
Speaker:a lot of times when it comes to disability,
Speaker:there are disabilities that are quite visible to people in the world,
Speaker:and then there are those that are not visible,
Speaker:and there tends to be sort of a stereotype about what disability...
Speaker:I'm using it like a singular, but of course,
Speaker:we're talking about a huge range of things when we use that one
Speaker:word, but they're not all visible and the way that we talk about
Speaker:disability in society is, I think we can do a better job.
Speaker:Yeah, I think the world is kind of caught up a little bit
Speaker:in a binary of disabled versus non disabled and all assumption,
Speaker:as weird as it sounds, is, or at least maybe to us a
Speaker:least, it sounds weird, is that the default of assumption is that you're
Speaker:not disabled until you make it known you're disabled, and then
Speaker:depending on the person, disabled might mean all these things you're not
Speaker:saying, disabled, they expect a certain level of in capability to do these
Speaker:things, and meanwhile you might be somewhere more in the middle or
Speaker:something that affects you in a more minor way or something like that,
Speaker:and then you gotta try to prove the validity of disability,
Speaker:and it's a whole thing, and to kind of have. Not exactly the
Speaker:same as being in the LGBT community at all, but
Speaker:it's similar in the sense that once you out the fact that you
Speaker:have a disability, then there's a bunch of stereotypes and expectations
Speaker:and perceived biasness and all these things that come out. So you gotta
Speaker:decide sometimes, is this someone I want knowing I'm disabled? And
Speaker:it can be a lot, for sure. And in my case,
Speaker:I don't really have, you know, I don't get to decide,
Speaker:is this someone I want knowing I'm disabled because I use a power wheelchair
Speaker:and as soon as you meet me, it is as apparent as the color
Speaker:of my skin, which is, I'm dark skinned, and I was adopted from
Speaker:India, so those two things are equally obvious,
Speaker:but even though those two things are equally obvious, the first thing that
Speaker:perhaps a stranger would comment on is my wheelchair, and often
Speaker:people approach me and ask me questions that you wouldn't normally ask someone
Speaker:that you don't know. So then you have to decide for yourself,
Speaker:are you gonna share information with them? Who do you share information
Speaker:with? And how do you approach a subject if it's just a momentary interaction.
Speaker:I would never be surprised at the culpability and audacity of strangers,
Speaker:and I can see the connections to being queer and being disabled,
Speaker:but folks that feel so comfortable coming up to people they just met, barely
Speaker:know, never had a conversation with, and will ask a deeply personal,
Speaker:borderline, maybe even offensive question about their way of life,
Speaker:about their quality of life, that you wouldn't even ask maybe your own
Speaker:siblings or parents at home. So I would never be surprised at the
Speaker:audacity, and I think the conversation about invisibility, and visible disabilities
Speaker:is a good conversation to have because often folks may not even believe
Speaker:someone with the invisible disability even has such,
Speaker:and this notion of having to prove that you need accessibility,
Speaker:that you need resources, seems to be also a notion.
Speaker:And I think the interesting thing too is... And Aura you mentioned this
Speaker:right at the beginning about, the assumption is that...
Speaker:And I think built in there, the assumption is that people are not
Speaker:disabled until you find out that they are. So the norm,
Speaker:like a "normal person" doesn't have a disability unless you see that they
Speaker:do, and the same... I think the parallel there with queerness is certainly
Speaker:the case that people are assumed to be
Speaker:heterosexual until they come out. In my case, there's kind of the assumption
Speaker:that only older people have disabilities. I was born with my disability,
Speaker:it's not something that I acquired. When strangers do approach me,
Speaker:one of the questions they often ask is, "What happened to you?
Speaker:Did you have a car accident?" That's the stereotype that people have in
Speaker:their minds. Many people do have car accidents that lead to disability,
Speaker:but in my case, I was born with it and
Speaker:I hire my own people to work for me and help me with
Speaker:my every day life and in my work life as well,
Speaker:and people that I've met aren't used to someone as young as myself
Speaker:who's almost 40, hiring their own people and needing someone, they're used
Speaker:to only elderly people needing assistance. Yeah, that's tough. I think it's
Speaker:also important to almost add that neuro divergence is
Speaker:way more common than a lot of people would think it is,
Speaker:and I have this fear that people are masking or pretending they don't
Speaker:have neuro divergence because it'll change the way they're viewed and in
Speaker:a society in which we just said that it's cool to be whatever
Speaker:or to have whatever difficulties you have or whatever,
Speaker:in that society people's needs would get met and everyone would feel welcome,
Speaker:but if you have to pretend to be something you want to get
Speaker:through something else than what you are in order to get the results
Speaker:you want, I feel like there's always gonna be a bit of a
Speaker:resentment in the back of people's minds, it's gonna make them feel
Speaker:hurt and unheard, and just make it difficult to be the kind of
Speaker:person they wanna be. And I don't know if I'm explaining it well,
Speaker:but it's like that's important that people don't... That some day people
Speaker:feel like they can talk about their experiences
Speaker:and they are valid, and there's nothing wrong with having these difficulties
Speaker:or differences or struggles, that it is normal because what is normal,
Speaker:and so that they can get what they need and be the best
Speaker:person they can possibly be. I used to tell the students in my
Speaker:disability studies class, I'm disabled now, and I've always been since birth
Speaker:like I just mentioned, but one day if you're lucky, you will be
Speaker:too, because it means that you've lived long enough that your body will
Speaker:start changing and not functioning as it used to
Speaker:and so if you're lucky you will acquire some form of disability and
Speaker:need help in a society that values independence over interdependence, it's
Speaker:a really big deal for people to need help in ways that they
Speaker:view it only for babies or the elderly. So
Speaker:to be in between is often a difficult place to be,
Speaker:and even when people grow older, it's difficult to ask for help,
Speaker:because we live in a culture that doesn't value asking for help,
Speaker:even though all of us do it every day, at a store,
Speaker:at a restaurant, we just don't see that as basic, we see that
Speaker:as to be expected. Of course, we'll ask our waiters to help us, or
Speaker:someone that works in retail to help us, but we won't ask someone
Speaker:to help us to use the bathrooms, for example.
Speaker:Yeah, it's also kind of debilitating in a social way because
Speaker:you take the assumption that everyone can do a bunch of things,
Speaker:like driving, for example, means that we don't have transit systems that
Speaker:are accommodating to people who have any level of disability, and I don't
Speaker:mean just from maybe not having the wheelchairs properly, which
Speaker:could be it's own challenge, no doubt, trying to get on
Speaker:a bus or whatever with wheelchairs and lack of accessibility or whatever,
Speaker:but even from the perspective of like the buses in Milford take a...
Speaker:They're only run for like, I don't know, like 12 hours,
Speaker:and then there's like a three hour lunch break somewhere in the middle,
Speaker:so it's like... And the bus routes are only gonna go certain places,
Speaker:so it's like unless you... Any plan, you can possibly have,
Speaker:it's exactly all the things you need it to fit, if the thing
Speaker:doesn't happen, the thing you wanted to go to, the event you wanted
Speaker:to go to, the thing you wanna be part of,
Speaker:you just come to the realization that, "Oh,
Speaker:I guess I'll have to stay home instead."
Speaker:And for people who don't have disabilities that can drive and bring themselves
Speaker:wherever, it's not probably something they think about a ton,
Speaker:but it's definitely something that impacts your life when you are disabled
Speaker:in a significant way, if you don't drive, that is, of course,
Speaker:obviously. I don't drive, but I have my own car.
Speaker:So the people that work for me also have to drive it,
Speaker:and there's a lot of coordinating and juggling in that because not all
Speaker:the people that work for me drive and that's different, but also before
Speaker:I drove, I also had to take either paratransit or buses,
Speaker:and like Aura said, that's very difficult to arrange, there's caps and schedules,
Speaker:if I live too far off the route, they're not coming to pick
Speaker:me up, that's why I somewhat chose to live close to New Haven
Speaker:because we have city buses and accessible taxis, but even so,
Speaker:the car that I have, I had to get through the state,
Speaker:and that's $50,000. So a lot of things that people with disabilities need,
Speaker:whether it's a learning disability or physical disability,
Speaker:they are out of our price range, not many people I know own a
Speaker:$50,000 vehicle. And the reason that it's much is because it has to
Speaker:be modified, because even though I don't drive it, I sit inside it,
Speaker:so the cost of things is difficult. Absolutely. And I think
Speaker:there's so many good points that you both have made, and certainly
Speaker:disability is an interesting category to think about,
Speaker:because like you said, Sarah, some people are
Speaker:"born this way" and then other people move into and sometimes out of
Speaker:and back into various forms of disability as we age or as we
Speaker:exist in the world. Except now I'm like complicating things in my mind
Speaker:because, well, we can transition genders, but the race that you're born,
Speaker:that's not gonna change. The context around it might change. That's why
Speaker:I mentioned that when people see me, they see my skin color and
Speaker:my disability, but the first one I always get asked about is my
Speaker:disability, and in these times, you would think that it might be my
Speaker:skin color on some day, but it's never been that.
Speaker:I still think it's wild that... Jamil is
Speaker:cynical, so he's not surprised, but for people to come up to you
Speaker:and say, basically some form of, what happened to you?
Speaker:I believe it, and also it's shocking to me. Something I think about
Speaker:often even in DEI spaces, diversity equity and inclusion kind of spaces
Speaker:and groups, we don't talk about disabilities often,
Speaker:I have noticed. A lot of people are not having these conversations,
Speaker:they're not thinking about accommodations, what the other person may be
Speaker:experiencing, how to make maybe the client or your student, or X,
Speaker:Y and Z feel more comfortable in the space. We're not having these
Speaker:conversations. And I wonder how COVID has changed that.
Speaker:So many folks will say that COVID may be a mass disabling event,
Speaker:there were so many people who now needed the support of breathing machines
Speaker:to breathe in hospitals, where that was not happening previous. So our nation
Speaker:and our world as a whole, felt that change. Our lives changed drastically,
Speaker:and so I wonder, will that leave a lasting impact on how we
Speaker:view folks that have disabilities and how we approach
Speaker:helping and assisting. That thing has kind of been...
Speaker:First of all, it's important to mention that
Speaker:in some ways, even it's still not quite equal, like you think COVID
Speaker:stops everyone from doing things, it's not quite equal in the sense that
Speaker:if you could do less in the past,
Speaker:it doesn't bring us to even. It brings us closer to even
Speaker:but it's still... When your one chance to get out of the house
Speaker:was to go to the thing with a few friends, and all of
Speaker:a sudden you have to get yourself there because COVID has made it unsafe
Speaker:for people to be in the car together or whatever, then you just
Speaker:don't go to... What I'm saying is it's not totally equal,
Speaker:but it's a lot closer to equal. The saying that I've heard is,
Speaker:everybody's 24 hours in one day is not the same 24 hours.
Speaker:Sure. If you use paratransit, if you use transit, if you had PCAs, aides,
Speaker:as I said caregiver, that only come in at certain times,
Speaker:like the way that I use my time, and the way that Aura is
Speaker:talking about, the way that you do things really depends on
Speaker:how much you're able to do in a given day and
Speaker:not everybody is the same, and that depends on a lot of different factors.
Speaker:Yeah, absolutely, and the one thing that really... One thing has shown dramatically
Speaker:to change though, is how much more accessible we can make the world,
Speaker:how much more stuff we could put on a Zoom call that would
Speaker:normally require me to take an hour or two, both ways,
Speaker:to go only 15 20 minutes by car or whatever, instead we can
Speaker:make it a Zoom call and have that be that.
Speaker:Even so much from the position of work and stuff,
Speaker:even affecting non disabled people, to be honest,
Speaker:to take away some of these commutes and some of these extra things
Speaker:that were never needed in the first place, has been eye opening
Speaker:and positive and seeing how nice it is to have something a little
Speaker:more social sliver, to get a little cash, get little... The stimulus checks,
Speaker:to get a little money the extra money to help people and all
Speaker:these things, to see all the differences and positive changes this can make,
Speaker:and then to see the entire world go, but we're still a capitalist
Speaker:country, and you need to justify the value of your existence,
Speaker:you need to have puritanical work values, you need to
Speaker:be so morally uprighteous as to fit a certain expectation of the kind
Speaker:of person you're supposed to be in order to get help.
Speaker:You've to consistently prove you are worthy of any kind of help.
Speaker:And... And unfortunately, any positive changes will be damned when we still
Speaker:think of people in that framework, when we go...
Speaker:When we change to the mindset of everyone deserves a certain level of
Speaker:help if they need it, so that we can all function,
Speaker:that'll be a huge positive change, make a little difference; until we adopt
Speaker:that mindset, these changes always feel temporary, it feels like
Speaker:when just thing changes a little bit, we're gonna go back to where
Speaker:we were, even if we saw all the positive differences that can make.
Speaker:I agree with Aura, because a lot of people are surprised to learn
Speaker:that I don't just get my wheel chair, I'm not just granted my
Speaker:wheelchair or my walker or my shower chair, I have to advocate for
Speaker:it and ask for it and have it in writing of why I
Speaker:need it. And it has to be processed and
Speaker:revisited every couple of years, so all this equipment that I've been using
Speaker:all my life and that I definitely need and couldn't function without them,
Speaker:there is always a worry in the back of my mind about,
Speaker:will I qualify for another wheelchair, what if like I've had a walker
Speaker:now that I've had since six grade, and I've been looking for three
Speaker:years to get a new walker, and I can't find a similar one,
Speaker:so even the basic things that I need,
Speaker:equipment that people think I just receive because it's obvious that I have
Speaker:a disability is not the case, 'cause like Aura said, you have to
Speaker:constantly prove why you need it and that you're worthy of or something.
Speaker:Yeah. Yeah that believability piece, especially in your case, Sarah, you're
Speaker:proving something that has always been true. Means that you have to... It's
Speaker:not... Since you have to continuously make a case for and advocate for,
Speaker:and you're highly educated, highly capable, highly skilled person, and I
Speaker:just think about just how many folks don't have that...
Speaker:And don't have resources to be able to advocate
Speaker:for what they need and just how much time and energy. It's difficult
Speaker:to navigate systems, it can get very tiring, it's hard to be persistent,
Speaker:so not everybody has that ability, and I understand why they don't have
Speaker:the time or energy, but... It's... Sorry. It's a double edged sword,
Speaker:the situation because like... Okay, let me give you an example.
Speaker:So, I'm sure you guys have heard by now,
Speaker:the whole idea of get an unemployment or get disability or whatever as
Speaker:long as you do then do the things to get yourself so you
Speaker:no longer need it, take it for time you need it and then
Speaker:get off of it so that other people can get there whatever so
Speaker:that... 'Cause once you have savings and you can put aside you can
Speaker:basically, it's people who don't want you to forever be on disability or
Speaker:whatever. They'll say that 100%. But then they'll set a $2000 limit on all
Speaker:your savings, so let's say I don't really have enough money to really
Speaker:invest in Wall Street, but let's just say
Speaker:I was so good at budgeting, which would be a miracle by the
Speaker:way, because you have to pay for food and shit and stuff so it's not
Speaker:really realistic, but let's just say I was able to put aside a
Speaker:decent amount of money each month and was able to start investing in
Speaker:stocks and be able to put a savings aside and all that.
Speaker:I would very quickly be over 2000, and then I would no longer
Speaker:receive any money, so I wouldn't have a chance to ever build those
Speaker:savings, so I can eventually be independent. They set a system where they
Speaker:lambast you and criticize you and get upset at you because you're dependent
Speaker:on them, but then they create the system in such a way where
Speaker:you can never not be dependent on it, because if you can't have
Speaker:more than $2000 savings, come on, is anyone gonna retire on less than
Speaker:$2000 of savings? Right. So, when I'm not working, that's the same limit
Speaker:that I'm under, and that's why I mentioned my expensive car,
Speaker:for example. Yeah. The reason that I can't even if I had $50,000,
Speaker:which I don't think I have and will. Someone just won the Powerball
Speaker:in Chester, which is where I used to live, so it's possible,
Speaker:but in general, I don't have the means through the way the system
Speaker:is set up to achieve economic stability, financial stability, even though
Speaker:I'm always asked when I'm evaluated or receiving help for my aides, I'm
Speaker:always asked, "What are your goals?" And what I say is,
Speaker:my goal is to stay in the community, but what I wish could
Speaker:say is, my goal is to buy my own car, my goal is
Speaker:to publish a book. My goal is to do these things that you
Speaker:don't even see possible, that's not in paperwork because like Aura said,
Speaker:there's such a low standard set. And I'm really freaking lucky 'cause my
Speaker:parents help me in a million ways, they helped pay for my phone,
Speaker:they help pay for cable to do all these wonderful things,
Speaker:to help me out and make sure that I have... I'm living a
Speaker:quality of life that would be decently, somewhat above
Speaker:what my income would be I would think.
Speaker:So it's like... On one hand I'm truly, truly grateful for all that,
Speaker:and it's wonderful that I'm lucky, but then also not everyone has a
Speaker:family that's doing decently enough to help them out and all these other
Speaker:things, if I didn't have the support and helped my family,
Speaker:if I didn't have my mom bringing me shopping once a week and
Speaker:doing all these things... Being disabled in today's world would be really
Speaker:rough, it's not easy as is currently is, but it would be really
Speaker:freaking rough if my parents weren't, like I said, helping me with my
Speaker:cable bill and things in that nature, and making sure I have internet
Speaker:and all these other things. So it's frustrating to think,
Speaker:to imagine for a second, to relate to other people, to imagine someone
Speaker:who doesn't have the support I have. I think that's where the advocacy comes
Speaker:in, with something... Absolutely. And we both advocate, but also
Speaker:sometimes I feel like even though I always wanna help everybody else like
Speaker:many of us do, that sometimes I only have the energy to advocate
Speaker:for myself because... And that itself helps other people, but by example,
Speaker:I hope, but even among people with disabilities, like we said at the
Speaker:beginning, there's such a wide range of disabilities and different needs,
Speaker:that to know exactly what someone's situation is and help them figure out
Speaker:how to navigate it is really difficult, to find someone in exactly the
Speaker:same situation that you could talk to or relate to and be like,
Speaker:"How do I deal with this specific issue?" It's nice to know that
Speaker:others can relate to you, but it's different to find someone that can
Speaker:actually help you navigate different barriers that you face... Yeah. Yeah.
Speaker:Point up. And I think it brings us to a really good point
Speaker:of this conversation, what we talk about how hard it is to be
Speaker:not only your own advocate, but for advocating... But other people in your
Speaker:own community, but... What can the folks that are not part of that
Speaker:community do to uplift and also advocate on your behalf,
Speaker:even in small or large ways? So I think about often in the
Speaker:space of higher education, how can folks, faculty, for instance, make classrooms
Speaker:more accessible, how can folks that work in facilities ensure that buildings
Speaker:are accessible, how can deans make sure students are getting the resources
Speaker:they deserve and need to thrive at a university or a college?
Speaker:So I think about admin for instance, how can they give out funding
Speaker:to ensure that certain pockets of students needs are being met?
Speaker:And how can they facilitate that for the rest of their staff to
Speaker:follow, the trainings we receive, how are student peer experiences?
Speaker:What are the training they're receiving around disabilities?
Speaker:I think that we're at a public university,
Speaker:in any public institution, in any institution period,
Speaker:I think should have a responsibility to welcome the whole community,
Speaker:and we know that institutions of higher ed are historically exclusive,
Speaker:and I think sort of fundamentally, a lot of people are excluded period.
Speaker:Sarah, you were mentioning people always surprised to find out like,
Speaker:oh, you're a professor. Yes. When I was first starting off,
Speaker:trying to go through school, I needed help from the state to help
Speaker:me hire people. When I was 19, I suddenly got thrust into like,
Speaker:"Okay, you have to hire people to help you through school,"
Speaker:you know... And that was totally new. They said,
Speaker:"What is your dream job?" And I said, either to teach at an
Speaker:art school, or to become a university professor. And they said,
Speaker:well, you can't do that. And I said, well,
Speaker:we didn't say this was reality, you asked me what my dream job
Speaker:was, and he said, well, you could accomplish enough with just a bachelor's,
Speaker:and so they weren't gonna let me go forward because they are looking to
Speaker:what makes me employable, and I'm glad to be employable, there's people
Speaker:that can't work at all, but that was again, that low standard so... have
Speaker:higher standards and communicate with the different people that are disabled
Speaker:and ask them what their needs are and just be open and receptive.
Speaker:And being told what you can't do. You're not capable of doing that,
Speaker:or this thing is not for you. Yeah,
Speaker:the system itself in that way is disabling.
Speaker:There's a constant infuriating dissonance between the message we are all
Speaker:given when we were younger, which is, go achieve your dreams.
Speaker:You live in the land of possibility, anything can happen,
Speaker:and then you start to, especially in the case of being disabled, even
Speaker:to a degree, being a person in general, I won't deny it happens
Speaker:to everybody to a different degree, but I think it's almost like a
Speaker:different level when you're disabled and it's like,
Speaker:okay, what if you wanna become a baseball player? Well, if you're
Speaker:physically disabled, if you're physically disabled even to a small degree,
Speaker:you probably aren't gonna become the super athlete necessary to become successful
Speaker:in baseball or whatever sport you can imagine,
Speaker:and if you've got a super visible obvious disability, then yeah,
Speaker:it's gonna be basically a miracle at that point, unfortunately,
Speaker:and this is not a knock on the passion or the work ethic
Speaker:of people, but it's just, there's a certain level athleticism when you're
Speaker:going to top level sports that if you're starting from a certain level
Speaker:of challenge, the odds of you actually making it to where you'd need
Speaker:to be are very likely and well, you can go, okay,
Speaker:obviously, then don't become a sport player and fair enough, but everything
Speaker:to one degree or another, presents itself with a
Speaker:level of challenge that in some way compounds upon itself...
Speaker:If you have a disability or if you have something that makes it
Speaker:harder, even so much as... I'm trying to do music. This is a
Speaker:good example, I'm trying to do music and
Speaker:when it comes down to it, when getting together with friends to work
Speaker:on music or whatever, when I can never bring myself to where we
Speaker:need to be when I need someone to pick me up or drive,
Speaker:that adds extra maybe half hour both ways, and all of a sudden
Speaker:something that would have been really feasible if I could drive myself there
Speaker:becomes a lot less feasible, and I think that happens to...
Speaker:Even to go away from that, I think it happens to a degree
Speaker:to everybody, everyone gets told achieve your dreams
Speaker:when it's a nice little message on a TV show or whatever,
Speaker:but when it actually becomes you actually actively pursuing it,
Speaker:your dreams, in order to get the support and kindness and help you
Speaker:need along your way, your support has to fit
Speaker:the expectations of dreams you should be going for by someone's standard.
Speaker:If you want your parents' help, you gotta go for a dream that
Speaker:your parents will support, and in some cases, they'll support anything,
Speaker:and in some cases they won't... Some folks, they'll say, "Hey,
Speaker:you wanna achieve that particular dream, I think you should be going to
Speaker:become a doctor or a lawyer, and if you don't go for that,
Speaker:then I don't really wanna help you," or
Speaker:if it's the state or... It's people with disability should have these expectations
Speaker:to go for these goals but not these...
Speaker:And... I guess what I'm saying is it's harsh,
Speaker:when you get told your whole life and fed your whole life that
Speaker:you should go for the dream, and then when you actually try to
Speaker:achieve whatever that dream of yours is, and you're getting told that
Speaker:it's not a dream that we feel is worthy of supporting.
Speaker:That's tough, and that's tough for everybody, not just disability, but especially
Speaker:disability. I think it's even a larger conversation, 'cause it reminds me
Speaker:of the lift yourself up by your own bootstraps. Amen, yeah. That you
Speaker:hear often, and that argument has been used on
Speaker:numerous marginalized communities that somehow you should be able to lift
Speaker:yourself out of your own situation and climb the social ladder,
Speaker:independently, even while the society is actively oppressing your community,
Speaker:so just forego the oppression that society is placing on your community,
Speaker:and instead reach towards social mobility, which we know statistically is
Speaker:just a difficult thing to achieve in this nation, especially compared to
Speaker:other nations that are around the same playing field as us.
Speaker:So I think often, it's not even about reaching for your dreams,
Speaker:it's about having your basic needs met. So many people are just trying
Speaker:to have their basic needs, they don't wanna be an NFL player,
Speaker:or the next huge American Idol singer, they just wanna have a safe
Speaker:place to sleep, food to eat, have their medication paid for,
Speaker:they just want basic needs, and even those things can be hard to
Speaker:attain when active oppression is happening, even if those around them do
Speaker:not even necessarily acknowledge that oppression is happening.
Speaker:Oh yeah, also, are we allowed swear on here or no? We do. Huh? We do
Speaker:sometimes. Okay, well, then I'll say it the way I actually wanna say
Speaker:it, which is the whole notion of pick yourself up by your bootstrap, is
Speaker:fucking bullshit. The mere idea of it is total bullshit,
Speaker:and what I mean by that is that
Speaker:we as humans function as the species, a social species that helps each
Speaker:other, that works together, every single thing we fucking do, if you have
Speaker:streets, that's because someone who was not you most likely, probably paid...
Speaker:Statistically, I'm sure it's possible, you're one of the people working
Speaker:on it, but most likely, statistically, that's only a small, small version
Speaker:of people, if you have anything on this planet that exists,
Speaker:it's because we all decided to help each other and accomplish things,
Speaker:and even these people who are... Who say, the people who are the
Speaker:biggest proponents are people who, they're trying to get their emotional
Speaker:needs met, they're having lives, they have friends, they have oftentimes,
Speaker:they have resources that maybe some of us don't...
Speaker:They have all these things that only exist because we live in a
Speaker:society of things that exist, and social presence, social availability,
Speaker:that makes it possible. Okay, let's say these people... Let's say someone...
Speaker:One of these people who love this bootstrap mentality. What happens if their
Speaker:house gets broken into? Do they call... Do they take care of it
Speaker:themselves, personally, because they're all about independence and believing
Speaker:in themselves, and can do it all on my own, or do they
Speaker:call the police? They call the police. We all... I'm sorry,
Speaker:I'm sorry. It goes back to my point about interdependence and how
Speaker:society generally believes in, that you can do everything by yourself,
Speaker:and I admire people that are very independent, I do. I think I
Speaker:met a lot of teachers that I work with that are very independent,
Speaker:take on lots of classes, do a lot,
Speaker:but me, for example, I'm only... Because of my disability and my disability
Speaker:check that I received when I'm not working, I can only teach one
Speaker:class and people ask me, "Well, you have
Speaker:several degrees. Why don't you teach more? You're very smart.
Speaker:Why don't you do more?" And they mean it in the best...
Speaker:In a well intentioned way, and there are people that know me well,
Speaker:but then when they learn my circumstance, they understand that I've done
Speaker:the best with what I've got, and that's all that anybody can do,
Speaker:even doing that is sometimes sometimes difficult. Yeah. The question of
Speaker:interdependence has been coming up a lot on the podcast.
Speaker:The last part of the season actually, and
Speaker:often I think about, I'm gonna make a relation to transness. A lot
Speaker:of times people conflate transness with hardship that they're one and the
Speaker:same, just think about all the ways that that is hard or like
Speaker:a parent, like a kid comes out to their parents,
Speaker:and then the parent thinks like, "Oh, this is a tragedy for my
Speaker:child's life; everything's gonna be so hard for them and people are gonna
Speaker:treat them badly," all of that, all this negative, something is brought
Speaker:up. And at some point, I started to
Speaker:think about and ask people like, What do we bring? What do we,
Speaker:uniquely as a group of people, what do we have to offer?
Speaker:What have we learned from our experience that
Speaker:is not a hardship, but is something that is really valuable
Speaker:to us and to other people that you we share. I think in queer communities,
Speaker:in general, I think that interdependence is one of those things,
Speaker:and caregiving, mutual aid, certainly... Tenacity is another one, but interdependence,
Speaker:like, I think that that point is really
Speaker:an important one, especially in American society that is so caught up on
Speaker:the values of independence, of being a productive worker and measuring people's
Speaker:work in that way. But I'm wondering if Sarah maybe you could say
Speaker:a little bit more about interdependence. I'm thinking about how I was at
Speaker:19. I certainly was not in a position where I could...
Speaker:I couldn't even imagine myself being capable of coordinating caregivers
Speaker:at that age. I mean, I... Never long enough. I could barely handle
Speaker:those. When you're in elementary through high school, you're given someone
Speaker:that already... You're assigned an older adult that's gonna work with you,
Speaker:but when I came to Southern, they told me I have to find my own caregiver,
Speaker:and I was like, "Okay, how do I do that?" And they were
Speaker:like... And this was two weeks before school, and they told me,
Speaker:"Well, you have to put up flyers," and I'm like, "That's not very
Speaker:helpful." But southern is one of the most supportive places that I've been
Speaker:in terms of disability, but still, even at Southern and even out in
Speaker:the community, it's even harder to find people.
Speaker:And not only to find them and get them to interview and
Speaker:all of that kind of responsible stuff, but
Speaker:just navigating like, "This is my life and this is yours,
Speaker:and how do we help each other?" Like today, right before this podcast,
Speaker:someone that worked for me for five years said, "You're the star of
Speaker:your own life," and she's someone that I know very well,
Speaker:and she knows me, and I believe her, but like I can't be
Speaker:the star of my own life if no one comes to get me
Speaker:out of bed. Like it doesn't... It doesn't matter. So in order to
Speaker:pump myself first, I have to put others first. And that's hard,
Speaker:and it's hard when you're 19, and to be like, "Okay,
Speaker:I don't want you to go and party and worry about these typical... "
Speaker:I mean, that's a stereotype too. Not all college students party,
Speaker:but to balance college life and the social demands and also work for
Speaker:someone who needs help but is also a college student as I was,
Speaker:so it's like a tricky balance, and being a good communicator is super
Speaker:important because people get... People need to understand that even though
Speaker:they may be caring people, this is... At times, it may still be
Speaker:just a job to them, because I have a l ot of people
Speaker:that come to work for me over the years and now they have
Speaker:hard days, they are having difficulties themselves, especially during this
Speaker:pandemic, and sometimes I feel like I'm kind of like
Speaker:a counselor to them, and I want them to speak to me and
Speaker:tell me about their life so that we can move forward and have
Speaker:a good day and try our best during the shift because their shift
Speaker:is actually what makes up my life. So,
Speaker:to them, it may be just a shift at the moment,
Speaker:but those shifts make up my every day
Speaker:routine and what I am trying to accomplish, and that's why sometimes I
Speaker:feel like me being a professor, as great as that is, people see
Speaker:that as the highest accomplishment that I can achieve, and I know that
Speaker:that's incorrect, but sometimes I don't know what more I can achieve if
Speaker:I don't have better help or the people that are working for me
Speaker:don't have better help. Sometimes people say that
Speaker:my aides and my PCs, personal caregiver, seem more disabled than me,
Speaker:I have more disabling circumstances, so this whole notion of independence
Speaker:assumes that everybody is "stable", but I'm working with people that are
Speaker:from minority groups, I'm working with people that don't have much money,
Speaker:I'm working with people that face inequalities themselves, and that makes
Speaker:it... That makes it a very caring community of people, but also makes
Speaker:it very difficult, and I appreciate both sides of it,
Speaker:but... Something I'm thinking of is... And KC, you had me rolling my
Speaker:mind on it when you were talking about
Speaker:how we view hardship. You come out as trans, people think of hardship,
Speaker:you come out as gay, they think of hardship, you're born with disability,
Speaker:they think of hardship, you're black, they think of hardship.
Speaker:All these things, people immediately think, life is gonna be hard,
Speaker:you're gonna have all these horrible experiences, X, Y and Z,
Speaker:when often, when you ask folks that hold one or multi of these
Speaker:identities, some of the first things they don't think of is hardship.
Speaker:They don't... Most people that are marginalized don't think of hardship
Speaker:as some of the first things that come to mind as an everyday
Speaker:part of their life. And I was talking about this a couple of
Speaker:days ago, you know it's Black History Month, all the streaming services,
Speaker:they have a category that's say "black voices".
Speaker:You look on black voices, all the movies are about enslavement,
Speaker:they're about Jim Crow, they're about hardship, they're about voting rights,
Speaker:they're not about black romance, black comedy, black joy.
Speaker:So I think often when it comes to being a part of a
Speaker:marginalized community, you have other folks writing your story for you.
Speaker:You have people in power, people that are not even from your own
Speaker:community, writing stories about your community and what they think that
Speaker:experience is like on a an every day basis. Almost every movie I've
Speaker:seen with a gay character is about that person coming out of the
Speaker:closet, and it revolves around coming out of the closet as if it's...
Speaker:There's one huge moment in your life like a Quinceañera, and it's like,
Speaker:boom, it's a huge thing that every character has to go through it
Speaker:on the big screen. And it's almost like the same stories of hardship,
Speaker:and these very unique stories of hardship are constantly pinned on communities.
Speaker:And I wonder, 'cause you know, KC, you're a storyteller, we're on the
Speaker:call with two artists, when folks are able to create their own stories,
Speaker:define their own selves and express that with the world, will these narrative
Speaker:shift on how we view each other and how we interact?
Speaker:Right. And there's the hardship. We can't... We're not gonna say that there
Speaker:isn't a hardship, 'cause obviously there is. And that's not the fullness
Speaker:of someone's human being like by it... By any measure. I remember
Speaker:Questlove actually said something that I thought was really, really pertinent
Speaker:to this kind of thing, and so much so that literally in the
Speaker:middle of this his interview on The Daily Show, I literally went straight
Speaker:to my Facebook, I was like, "Okay, I need to talk about this."
Speaker:He said something to the effect that I'm paraphrasing here, 'cause I don't
Speaker:have the greatest memory. But he said something about, to truly appreciate
Speaker:the black experience you need to see black joy,
Speaker:you need to... And that goes, and that's 100% true to all marginalized
Speaker:communities that are not understood, you need to see... In order to see
Speaker:the wholeness of a person and to truly appreciate them, you need to
Speaker:see them in not just in pain, you need to see them in
Speaker:the fullness of the different experiences people have, that's when you start
Speaker:to see them as equals and see them and to be invested into
Speaker:there, because if it's just constant displays of trauma and difficulties,
Speaker:you miss out on a lot, and I almost feel like I obviously
Speaker:I can't speak to being black. But when you talk about
Speaker:for trans for me and stuff like, there's been so many challenges from
Speaker:it, but like the amount of joy of being who I am and
Speaker:as scary as it is that being vulnerable in that ask,
Speaker:answer, asking myself questions about who I am and honestly answering it
Speaker:rather than answering it in what society expects of me,
Speaker:those communities that accept you for who you are,
Speaker:those little pockets of heaven, make everything else worth it.
Speaker:So it's like there is joy in our lives, it's not like we're
Speaker:constantly sad and constantly depressed and constantly having difficulties,
Speaker:there is joy, and I wish there was more of that displayed in
Speaker:media because I think that's the kind of thing
Speaker:that makes a world of difference when there's a sitcom character who happens
Speaker:to be... Something happens to be, let's say LGBT, but that's not their
Speaker:defining character trait, when it's not constantly being talk about, that's
Speaker:when a person goes, "Oh wow! It doesn't make a difference about who
Speaker:they are, I like that character, I would like a person with those
Speaker:traits." Oh, wait a minute, if the person could be like that and
Speaker:also be LGBT or a person could be like that, and I also
Speaker:be black, or also be whatever. That's when you start to realize,
Speaker:"Oh yeah, I wouldn't mind having a friend like, does it really make
Speaker:a difference? No, it doesn't." It's to be seen as... To be have
Speaker:our defining trait to be something other than our identity, helps other
Speaker:people accept that we could be those things. And also disability activists
Speaker:have been so key in and I don't... Is it necessarily if I remember who this
Speaker:is... But I think there's a disability activists who said that if you're
Speaker:not at the table, you're on the menu. Certainly that is
Speaker:a common organizing principle which is if you're not in the writers room,
Speaker:if you're not at the table when the policy is being made,
Speaker:I mean, really like just fierce demands for inclusion, protection.
Speaker:That's one of the biggest issues with Autism Speaks.
Speaker:Everyone talks about how that entire group is supposed to be about autistic
Speaker:people and about the struggles they face and helping them and stuff,
Speaker:but it's actually just a bunch of people who don't have those experiences
Speaker:deciding what they believe help is needed and what they believe the issues
Speaker:are and what they believe is worthwhile putting on the agenda,
Speaker:and to be honest, that mindset damages people because not all of us
Speaker:necessarily see autism as... The way people who don't have autism might
Speaker:see it or the way people who... We don't necessarily want to not
Speaker:be a... We don't want to be less autistic, we want to meet
Speaker:be ourselves, and when it's put in such a way where it's like,
Speaker:How can we help autistic people fit this binary... This traditional expectation
Speaker:about what a person is, it erases who we are to say that
Speaker:autism is an inherently a bad thing, inherently wrong about it, but it's
Speaker:not that different from the X Men, if you really think about it,
Speaker:the comics X Men, it's like, Yeah. Maybe we want the power,
Speaker:maybe we wanna keep our powers, maybe so to speak, maybe we're proud
Speaker:of who we are, we don't want to... It's not about being normal,
Speaker:it's about creating a world that allows different kinds of divergence,
Speaker:that allows different kinds of weird and different kinds of...
Speaker:So it's like there needs to be whatever the movement is,
Speaker:if it's for a thing, you need a bunch of people that are
Speaker:that thing at the table or else what is the movement even in doing?
Speaker:KC, this is connecting to last season or first couple of episodes of
Speaker:Ally ship, so many allies that call themselves allies or maybe even communities,
Speaker:refer to them as an ally, can get lost by
Speaker:being too much of a leading force for a community or a cause
Speaker:that's not about them. And that's not for them. I think often allies
Speaker:need to learn when to take the back seat,
Speaker:and allow the folks that you are advocating for to lead the change
Speaker:and to lead that movement, it's so beautiful to support a community,
Speaker:it's beautiful to be an advocate for community, but you shouldn't take up
Speaker:so much space. And that goes for so many things, you shouldn't take
Speaker:up so much space that you are diminishing those voices, those concerns,
Speaker:and it's almost where the movement is no longer about the folks you
Speaker:should try to serve, and that can fit a lot of shoes.
Speaker:Yeah, and I wanna get back to Jamil on questions that you brought
Speaker:up and then we sort of went... Took the
Speaker:conversation elsewhere, but we should be connected. I think, which is that
Speaker:in talking about specifically in higher ed. I mean, these institutions are
Speaker:not... Been built with able bodied people in mind... They're built for,
Speaker:"normal people", most of these institutions were build for men,
Speaker:not even for women. And then and I say that in terms of
Speaker:physical spaces, but also beyond that, the expectations for who is higher
Speaker:education for. And then we have these institutions that have been around
Speaker:for however long and what... When we talk about accessibility, it seems
Speaker:to me that we're retrofitting an institution that is not built, I mean,
Speaker:that is built specifically for "normal, able bodied, independent, very independent
Speaker:people". And I wonder if there are ways that we can take a
Speaker:more universal design approach that is less about, let me provide individual
Speaker:accommodation for individual students on the case by case basis, which involves
Speaker:a lot of advocacy and a lot of work, and then what are
Speaker:some ways in the classroom, or other ways, I think that's so we can
Speaker:be more accessible universally, that it would benefit
Speaker:everybody? Like a wide hallway, who does not benefit from a wide hallway?
Speaker:Or having classroom instruction in multiple modes, who wouldn't benefit
Speaker:from having those kind of options. Anyway, Sarah, I love to hear
Speaker:your thoughts, you have been on both sides,
Speaker:not to make it just a binary, but you've been a student,
Speaker:a graduate student, a professor. I'd love to hear your thoughts. I think
Speaker:it's... Again, there's so many disabilities that I think people...
Speaker:That's why they have such an individualized approach, "Okay, you told me
Speaker:to ask the individuals, so now what do you need with your accommodation,
Speaker:go to the disability resource center, whatever is available at your school
Speaker:and get documentation and let's see what we can do, but... "
Speaker:I know that even just the physical arrangement of a room,
Speaker:again, because I have a wheelchair, it's harder to go through
Speaker:in between rows of desks, so I put my... Have my students arrange
Speaker:the desks in half circles so that I can monitor them working better,
Speaker:but I feel like if other professors took into account the layout of
Speaker:the room and 'cause you have class outside sometimes and
Speaker:it's virtual learning, something that you may use even after the pandemic.
Speaker:I know there's been professors, not at Southern, but at other universities
Speaker:that don't require... I don't know how I feel about this because I'm
Speaker:not sure how I would implement it. But instead of requiring if someone
Speaker:is absent and requiring a reason or a note, they just assume that
Speaker:you're going to need that time to yourself and they don't require a
Speaker:justification, of course, of course, if it's chronic then the student needs
Speaker:to be spoken to and something needs to be worked out to help
Speaker:the student do well in the class, but, you know, we're not not
Speaker:having students always remain in their seats, are there ways that you can
Speaker:teach where you're not thrown off if someone needs to get out of their seat
Speaker:or needs to walk out of the classroom.
Speaker:Can you have... I don't know how I would do this.
Speaker:But I don't know if there is equipment, there probably is that turns
Speaker:things that are not written in Braille into Braille. I know there are
Speaker:things like that. Can you do that with the syllabus?
Speaker:These are things that make me think about and how we sat in
Speaker:our class, can you see that, you know, simple things as relating to
Speaker:transness, like saying your pronouns and asking your students if they have
Speaker:pronouns or nicknames that they wish to be called by and do they
Speaker:have any accessibility needs? And now I am saying that I have my
Speaker:own, besides an accessible desk, I had this aid, I... It had to
Speaker:help me take notes. Does anybody else have accommodations that they need,
Speaker:whether they have a disability or not, there could be a note taker for
Speaker:each class, so that students who may not be able to focus on
Speaker:taking notes and listening to the professor could
Speaker:pay attention to the professor more without worrying about that responsibility.
Speaker:Yeah, I came to Southern as a first gen student, and universities can
Speaker:be extremely difficult to navigate, especially when you have needs that
Speaker:are different from other students, universities can be really hard to navigate,
Speaker:especially for people that have never been in these kind of spaces before,
Speaker:or even have family that are... From these kind of space, that have
Speaker:experiences and how to navigate these systems, and I'm not thinking about
Speaker:just Southern because we do have our own unique resources here at Southern
Speaker:that we do provide for students, but those resources may look different
Speaker:at other universities. At our sister schools, but also universities across
Speaker:the states, across the nation, even more complicated when you look across
Speaker:countries. So, when I think about ways in which faculty
Speaker:can support and ensure their classrooms are more accessible,
Speaker:is by, one, knowing the resources at their own university, right? Like knowing
Speaker:do they have a disability resource center or some type of equivalent at
Speaker:the university, what do they offer and familiarizing themselves with them.
Speaker:What kind of things do their university library offer.
Speaker:I know ours had a Braille machine, does theirs? Is there other departments
Speaker:that has one. Can they advocate to get one, for instance,
Speaker:if they had a student with that need?
Speaker:So, one, familiarizing yourself with the resources that your university
Speaker:has and doesn't, right? Maybe even discovering resources your university
Speaker:needs and telling administration and advocating for those needs to be met.
Speaker:I think of as some things that come to my mind first,
Speaker:and also people that are not faculty, right? If you're admin working in
Speaker:res life, how accommodating are your buildings. How old is your infrastructure?
Speaker:Does that need to be updating? Is that a priority?
Speaker:Because all universities do have budget constraints. They do have time limits.
Speaker:So, what are the priorities and how often are we evaluating those when
Speaker:we're talking staff behind doors, how evaluating what we have, what we don't,
Speaker:the experience students have. How are we collecting surveys to hear about
Speaker:their own experiences, are the sidewalks being shoveled correctly during
Speaker:a snow storm, are we making sure that's happening?
Speaker:It could be things that are simple, like do the disability buttons work
Speaker:for every door? Do every door house them? Are there elevators?
Speaker:Does this one building have just stairs and no elevators? So thinking...
Speaker:I think in multiple different ways about how is a building,
Speaker:how is a classroom, how is the experience accessible? What are the resources
Speaker:we have and don't have? I also deal with textbooks, I deal... Are textbooks
Speaker:accessible. Is reading accessible, is the price of the book, are you using
Speaker:open source textbooks? Can you provide alternatives? Do you have textbooks
Speaker:in your office? I've had numerous professors who maybe they keep two or
Speaker:three textbooks they have purchased or received from a publisher in their
Speaker:office, and they will give them out as a case by case basis.
Speaker:We have textbook loan programs at our university, some that their own department
Speaker:has started, so as a faculty member, there's a lot of ways faculty
Speaker:can give back and make sure their classrooms are accessible, even if they're
Speaker:thinking about unique ways that may not even exist out in their own
Speaker:campus. It feels like maybe to some people out there who are not
Speaker:dealing with these difficulties and these challenges, that a lot of this
Speaker:might sound like it would take hard and a lot of effort and
Speaker:a lot of resources and all of that, but
Speaker:I think it's crucial to keep in mind, first of all,
Speaker:like you guys said, these things weren't designed with people that have
Speaker:different experiences in mind, most of these schools were designed
Speaker:with white cis men and those kinds of things,
Speaker:or some may be slightly more... Maybe came in a bit later or may be more
Speaker:open to different groups, but I don't think any... Almost very,
Speaker:very few of these colleges were created with everybody that could go to
Speaker:college right now in mind, and so it's going to...
Speaker:You're not gonna be able to put the same amount of resources you
Speaker:put in to everyone else and expect to get the same results because
Speaker:we're not all starting from an equal place,
Speaker:and it may cost an amount of money and a bunch of your
Speaker:effort to institute all these kind of changes, but
Speaker:essentially, if we don't put the effort into trying, we're essentially saying
Speaker:that... They're saying that the communities that are affected by the thing
Speaker:don't really matter and don't deserve that equal opportunity.
Speaker:And when you put it that way, when you instead of saying convenient
Speaker:lies to yourself and what makes it easy. When you say that if
Speaker:we don't do these kinds of things, we are saying essentially that if
Speaker:you don't make it accessible to a blind person, then you're saying essentially
Speaker:blind person shouldn't have a good experience at your school, shouldn't
Speaker:be equal, shouldn't be part of the thing. And it's very difficult to
Speaker:tell yourself that 'cause it hurts if you're gonna say no,
Speaker:'cause it makes you look at yourself like, "Wow, am I a crap
Speaker:person?" But it's the truth, if you don't make the school accessible for
Speaker:different groups, you're essentially saying that, that group is not welcomed
Speaker:in your school, and when you say that,
Speaker:that's like... It doesn't feel right, and I think that should almost be
Speaker:a motivator, like I don't wanna have to look at myself in the
Speaker:mirror and say that this school shouldn't be accessible for these people,
Speaker:so let's do what we can to make it accessible for everybody.
Speaker:To make it something that everyone can appreciate and be part of.
Speaker:At the same time, then we have this whole... I just keep thinking
Speaker:about this idea of productive workers. So much of higher ed is like this
Speaker:business, like we must produce workers who will be then productive in our
Speaker:economy if less... In a perfect world, college would be
Speaker:just as much, if not more about the popular good,
Speaker:about strengthening our communities, about truly make education and not
Speaker:just job training. Okay. Universities are posed to be more, they are posed
Speaker:to be a place of learning, a place of growth, not just
Speaker:a class you take in order to achieve the job you want.
Speaker:I've been in classes where there are people 75, 85,
Speaker:who are coming to this university in order to do a course to
Speaker:have more social ties in the community, to learn a new hobby,
Speaker:and I think when we think about accessibility at a university,
Speaker:it's more than just helping one population of people,
Speaker:accessibility helps everyone, it makes everybody have a better experience.
Speaker:And often, we don't think about accessibility until we are the ones that
Speaker:need it, people don't often think that, "Oh, we should have this certain
Speaker:thing or we should really try to work on this problem until they're
Speaker:the one that are having that issue." But when we start putting things
Speaker:in play, and mind you, these issues are systemic and they won't change
Speaker:over night and they won't change next year, but when we're actively working
Speaker:on fixing these issues and making our spaces more accessible, we can all
Speaker:enjoy them better. And I think even folks who don't believe they would
Speaker:benefit from these changes would benefit and would have a happier experience,
Speaker:where do you meet folks that are coming from different ways of life
Speaker:and that will enrichen their university experience? That's one of the huge
Speaker:selling points of going to a university, is meeting and being with folks
Speaker:that you have never met, and how they will shape and help your
Speaker:life, how they may mentor you. So, I don't think folks are always
Speaker:thinking of that actively when they're in the university space, but hopefully,
Speaker:if we are hiring folks from diverse backgrounds, from diverse experiences,
Speaker:we're providing spaces that allow these experiences to exist in equitable
Speaker:ways. Because that's what equity is for, right? Looking at people and saying,
Speaker:you need more than this, and then this and this.
Speaker:We can all have better experiences. Well, you know I'm thinking...
Speaker:Sarah, has me thinking now about how... I'm just gonna tell her myself,
Speaker:because a lot of times when we go into classrooms, it just happened to me
Speaker:today, the tables are removed. They are in a different
Speaker:position, and the way that the tables were in my classroom,
Speaker:today was fine for my first class because it's not very full, but
Speaker:then in the second class, the way it is, it's like it wouldn't... Didn't
Speaker:work for everybody, so we had to move all the tables and nobody likes opening
Speaker:the blinds, it's sunny out, and it's February, so sunlight. And I... I'm
Speaker:just noticing how I really hesitate to ask for help.
Speaker:I tend to... If I can, I move all the tables by myself,
Speaker:open the blinds, etcetera. I feel... I almost feel bad asking for help.
Speaker:Now I'm interrogating, where does that come from? Why do I feel like
Speaker:I can't ask... When I was on campus, I would...
Speaker:On the first day of class, I asked the person that's working with
Speaker:me to do it because I don't know anyone, and then
Speaker:eventually, maybe one of the days, I'll use my wheel chair to plough a
Speaker:chair out of... Plough a regular desk out of the way and when
Speaker:the students sees me ploughing the desk, they're usually like, "Okay,
Speaker:let me help you." And then they... But doing it every day,
Speaker:like changing the desk set up every day, they usually get used to
Speaker:the routine, and usually there's always a couple of students who jump in,
Speaker:after I've been modeling it and they're like, "Hey, let me move the
Speaker:desk for you so that you're all set. Let me grab this book
Speaker:for you." So my students have been really great about catching on and
Speaker:in some ways I haven't had to ask them
Speaker:as overtly as someone might normally have to do.
Speaker:The thing about that is that I actually think that what...
Speaker:That act is like you're creating an interdependent community in which your
Speaker:students are taking care of, not just you but each other,
Speaker:there's a collective sense versus the situation I'm talking about or I'm
Speaker:like, I have to do all the things.
Speaker:And then students then are there to be... Where I'm taking care of
Speaker:things for them as opposed to here. And of course, we're co creating
Speaker:this learning environment together, but your students are doing that, it's
Speaker:not just a metaphor for what you're doing in class but that would
Speaker:create a different kind of community in the classroom.
Speaker:I think there's something to be said for
Speaker:that asking for help is always kind of an awkward experience.
Speaker:It's always kind of uncomfortable at first, 'cause you always wanna... You
Speaker:always don't wanna depend on anyone, you always wanna do your own thing,
Speaker:but when you are disabled, you eventually come to the realization that in
Speaker:certain ways you're gonna need help and you start to more get used
Speaker:to the experience. It's almost like building a callus
Speaker:and you start to go, "Okay, I'm not gonna be able to drive
Speaker:in 10 years, just like I'm not gonna be able to drive today
Speaker:so I gotta get comfortable with the idea of, if somebody wants me
Speaker:to be at a place. Asking them, is there a way where I
Speaker:can get there? You know what I mean.
Speaker:Or could I have... And I think if you are someone who is
Speaker:mostly capable of doing most things on your own,
Speaker:then that rare occasion where you need help on something all of a
Speaker:sudden feels weird and alien to almost ask for help.
Speaker:And I also think there's such a fear of taking space in this
Speaker:world, of causing people difficulties and the way people will respond and
Speaker:the way people will treat you because of it.
Speaker:And to have that kind... It's hard to build up that confidence where
Speaker:you're like, "I'm worth it." It's almost like self confidence. I'm worth...
Speaker:The challenges and difficulties I present, I'm still worth being around,
Speaker:I'm still worth being friends with or hanging out with or whatever,
Speaker:even if it means that if somebody has to go a little bit
Speaker:out of their way. I know that I bring enough to the table that
Speaker:it makes me being there worthwhile. So it's a constant game of dialogue
Speaker:you have to have with yourself and something you kinda have to learn
Speaker:to get comfortable with because everyone needs help sometimes.
Speaker:No one's good at everything and it's okay to need help. So many
Speaker:students go into university not wanting to take up space, especially if
Speaker:they're marginalized and don't look like majority of the student population.
Speaker:They wanna be in the background and their needs put in the background,
Speaker:but I always tell students, you didn't pay to be there,
Speaker:and probably a lot of money, probably a lot of money to attend
Speaker:these classes, to have access to these buildings, to the staff,
Speaker:to the faculty, you put a lot of money to be there.
Speaker:So taking up space is not something folks should feel bad about,
Speaker:just off the simple fact alone that you didn't pay to be in
Speaker:that space, you deserve to be in that space. And while you are
Speaker:there, your might, well, get everything you can out of that space.
Speaker:I also think about peer to peer support while we're talking about this.
Speaker:How much can your fellow peer support each other, not just in disabilities
Speaker:and asking for help, but just being in community, right? Like the power
Speaker:of study groups, the power of tutoring another peer,
Speaker:being in community, eating together, enjoying time together, I think university
Speaker:is a really interesting space where that occurs.
Speaker:Well, I'm hoping... So Jamil and I have wanted to, for a long
Speaker:time, have poets on the podcast. I'm sure you do have two poets. I'm
Speaker:not gonna say it's a segment, but maybe it could be a recurring
Speaker:segment in the future, but Sarah and Aura, you both brought poems to
Speaker:share with us today, and I think that would be a beautiful way
Speaker:to end this conversation because art helps us express
Speaker:the fullness of human experience, it helps us deal with hardship,
Speaker:it helps advocate and get things across, so I don't know who would
Speaker:like to go first, but would love to hear your work.
Speaker:Do you have a preference, Sarah? Would you like to go first or
Speaker:like me to go first. It doesn't matter. Well, if you wanna go
Speaker:ahead, I'll go after you. That's fine. Okay, sounds good.
Speaker:So the poem that I'm gonna share today has to do with that
Speaker:idea of... I think I mentioned it just in talking about the glass ceiling
Speaker:and how... In my experience when people meet me and I say,
Speaker:"Oh, I'm a professor." They say that's great, look at all you've accomplished
Speaker:and you've done so much. And its true, it took a lot to
Speaker:get there, but that shouldn't be the end of your high expectations or
Speaker:what I'm capable of doing. So this is a poem that kind of
Speaker:talks about that in a way... It's titled,
Speaker:different lifetimes. My mom always says, upward and onward,
Speaker:keep going. But had I not been adopted and lived in India more
Speaker:than a few months, my cerebral palsy probably would have cost me more
Speaker:than I can imagine. My disability wouldn't get me anywhere, stuck on street
Speaker:corners. Selling pencils, nothing noble, only retribution for a previous
Speaker:life, one that I couldn't remember, but one common determined I hadn't lived
Speaker:well. Had I lived in India, I would be a Vasundhara caste, the
Speaker:untouchables, scorned for past wrongdoings, often servants. Even as a servant,
Speaker:I'd be sure to disappoint upward and onward, falling to sealed ears.
Speaker:Here in Connecticut, a lifetime away. I'm a professor,
Speaker:teaching English, one class on the lowest rank of the academy.
Speaker:Even if I could step up, I lose the disability check that keeps
Speaker:all other checks in their place, ensuring they remain small
Speaker:enough for me to rent low income housing, enough to keep me fed with
Speaker:a packed fridge. Enough to keep me warm and off New Haven park benches.
Speaker:Those benches have helped the homeless, those with only enough for bus fare.
Speaker:I'm grateful to be in from the cold, but my ceiling is made of
Speaker:glass and I see right through it to cement. My raised fist bleeds, stared
Speaker:down in silence. No one speaks of steps for me and my wheelchair
Speaker:to make a grander entrance. Besides those seen as royalty, those I've dreamed
Speaker:of standing beside since I was five. Those who knew I could do
Speaker:more, be more, treated as equals in their classrooms.
Speaker:Not as someone special only relegated to resource rooms.
Speaker:My professors voices were loud, echoing my pants. "Keep going," they said,
Speaker:even when feeling shattered around me because someone else's raised fist
Speaker:came before mine. Yeah. Seriously. Drop the virtual mic. Yeah,
Speaker:absolutely. If you're ready. What did you say? When you are ready. Okay,
Speaker:got it. Got it. Yep, it's right here.
Speaker:Alright, this piece is about the difficulty of finding yourself and
Speaker:trying to live your truth, specifically in the LGBT community, but I feel
Speaker:like it can... If you think about it a little bit... If you
Speaker:think about a little metaphoric probably could fit a lot of different challenges
Speaker:and things that people might deal with in trying to navigate the space
Speaker:of not being what everyone expects or whatever. Alright,
it's called Commoner Quote, and it goes 01:15:38
Look at the hole in your
it's called Commoner Quote, and it goes 01:15:43
heart. Imagine if you tried to fill it hell with start, would you
it's called Commoner Quote, and it goes 01:15:46
consider giving in? Or would it become a battle? It's must win.
it's called Commoner Quote, and it goes 01:15:51
Would it become a battle that's must win?
it's called Commoner Quote, and it goes 01:15:53
You say you're intelligent but how much do you really want to know?
it's called Commoner Quote, and it goes 01:15:56
You close your mind with judgment and tell us when we die,
it's called Commoner Quote, and it goes 01:15:59
where we are gonna go. We are not broken. We don't need your
it's called Commoner Quote, and it goes 01:16:02
institution of saving. When fit into your choice lies feels like slaving.
it's called Commoner Quote, and it goes 01:16:08
So laugh and stare, enjoy the way your played out game is spit out
it's called Commoner Quote, and it goes 01:16:11
like gum, the scored man, the cannons, and then fire them to the
it's called Commoner Quote, and it goes 01:16:14
beat of their own drums. Although fighting is such a burden,
it's called Commoner Quote, and it goes 01:16:18
and you can't stop the world from turning. You don't want it to
it's called Commoner Quote, and it goes 01:16:21
stop anyway. Just change course to awaken the brave.
it's called Commoner Quote, and it goes 01:16:25
The rain will often come to rejoin the sky. But what follows is
it's called Commoner Quote, and it goes 01:16:28
majestic beauty that embraces the eye. A simple color held in visual prism,
it's called Commoner Quote, and it goes 01:16:34
a gorgeous sight beyond cynicism. It's hard to find the ones that make
it's called Commoner Quote, and it goes 01:16:39
you feel complete. We don't need the congregations of self righteous feet.
it's called Commoner Quote, and it goes 01:16:43
Your decisions of condemnation are baseless, you're preaching against our
it's called Commoner Quote, and it goes 01:16:46
right to free love is wasted. We are beginning not to have anywhere
it's called Commoner Quote, and it goes 01:16:50
for your words, just preferences and how to keep sheep in a herd.
it's called Commoner Quote, and it goes 01:16:54
There's something meaningful behind a smile, something meaningful enough
it's called Commoner Quote, and it goes 01:16:57
to break the rank and file. So let's eyes light up,
it's called Commoner Quote, and it goes 01:17:00
that should be enough to deal with what you find unpleasant,
it's called Commoner Quote, and it goes 01:17:03
time for a community of love in the present.
it's called Commoner Quote, and it goes 01:17:15
Yeah, we did it. Yeah, we did the third... Wooh. Well, I think...
it's called Commoner Quote, and it goes 01:17:21
Honestly, listening to both of those poems back to back, it's so...
it's called Commoner Quote, and it goes 01:17:26
Captures in a different way, I think, that long conversation that we just
it's called Commoner Quote, and it goes 01:17:31
had so much about community. Absolutely. Absolutely. I finally got to use
it's called Commoner Quote, and it goes 01:17:41
the applause button, so. Yeah, about that. And this has been a fantastic
it's called Commoner Quote, and it goes 01:17:48
conversation with you all. And I thank you for coming here and being
it's called Commoner Quote, and it goes 01:17:53
open and sharing your thoughts, your experience, and your expertise with
it's called Commoner Quote, and it goes 01:17:57
us and our audience. So thank you both. Thank you for having us. It's been
it's called Commoner Quote, and it goes 01:18:02
an incredible experience. Thank you. Yeah. And really, this is...
it's called Commoner Quote, and it goes 01:18:09
Your perspectives really have me thinking about... Jamil, and
it's called Commoner Quote, and it goes 01:18:14
I don't have disabilities at the moment. And I think that a lot
it's called Commoner Quote, and it goes 01:18:19
of times... It's a perspective that we don't necessarily... That we have
it's called Commoner Quote, and it goes 01:18:23
to actively bring in. And this conversation certainly opened my eyes
it's called Commoner Quote, and it goes 01:18:30
in ways that, I was just talking about as simple as noticing,
it's called Commoner Quote, and it goes 01:18:35
"Oh, wow, look at how I don't ask for help from students."
it's called Commoner Quote, and it goes 01:18:40
Challenging what we think of as normal or what students "Should be able
it's called Commoner Quote, and it goes 01:18:46
to do." And I think that, I believe, this conversation will be eye opening
it's called Commoner Quote, and it goes 01:18:51
for our listeners, too. So thank you so much...
it's called Commoner Quote, and it goes 01:18:57
To both of you for being here. Would now be an okay time
it's called Commoner Quote, and it goes 01:19:00
to mention the things? Sure. Okay, so first of all,
it's called Commoner Quote, and it goes 01:19:09
the piece I just shared actually comes from a poetry book I wrote
it's called Commoner Quote, and it goes 01:19:14
called "Forever Intertwined". It's poetry. Some of it's about
it's called Commoner Quote, and it goes 01:19:22
world topics like that, and some of it is about nerdy things I'm into or
it's called Commoner Quote, and it goes 01:19:28
whatever. It covers a lot of things. There's 30 poems in it.
it's called Commoner Quote, and it goes 01:19:32
So I'm particularly proud to have that book out, and...
it's called Commoner Quote, and it goes 01:19:35
Yeah, yeah, I have physical copies of, so I'm happy
it's called Commoner Quote, and it goes 01:19:41
to... Yeah, happy... Is there a way for our listeners to get a copy? Like
it's called Commoner Quote, and it goes 01:19:44
read it? Yeah, how do they read it? Oh, yeah, absolutely.
it's called Commoner Quote, and it goes 01:19:48
Yeah, I would need to... Maybe I could give my email or something
it's called Commoner Quote, and it goes 01:19:52
like that so people can see... Yeah, I do have physical copies,
it's called Commoner Quote, and it goes 01:19:57
and there is... Well, I'll have to figure out
it's called Commoner Quote, and it goes 01:20:00
a way to do it, but there definitely is a way if there's
it's called Commoner Quote, and it goes 01:20:02
interest, as well as something that will be a bit easier for people
it's called Commoner Quote, and it goes 01:20:06
to access without contacting me. I also have two EPs out, one for
it's called Commoner Quote, and it goes 01:20:14
the band called "The Illusive Men", and the EP is called "Suffer in
it's called Commoner Quote, and it goes 01:20:20
Full Today, Rebuild Tomorrow". So that's my main project, you might say,
it's called Commoner Quote, and it goes 01:20:26
musically. And then I also have a side project called "Recusant's Sigil",
it's called Commoner Quote, and it goes 01:20:30
and the EP is called "A Game of Martyrs and Parasites".
it's called Commoner Quote, and it goes 01:20:34
And they're both... I am the singer and lyricist of both projects,
it's called Commoner Quote, and it goes 01:20:39
so I'm particularly proud that people can check those out if they want
it's called Commoner Quote, and it goes 01:20:43
and see. Yeah, yeah, and just see if they're interested,
it's called Commoner Quote, and it goes 01:20:48
yeah, you can... We can put a link in the show notes,
it's called Commoner Quote, and it goes 01:20:50
perhaps. Huh? We can put a link in the show notes?
it's called Commoner Quote, and it goes 01:20:54
Absolutely, yeah, yeah, yeah, I'd be happy to. Just let me know,
it's called Commoner Quote, and it goes 01:20:57
I'd be more than happy to do it. But yeah, just if people
it's called Commoner Quote, and it goes 01:21:01
are interested and wanna check it out, by all means, I'm happy to...
it's called Commoner Quote, and it goes 01:21:05
Happy to talk to them and see about that,
it's called Commoner Quote, and it goes 01:21:09
but ultimately, I'm just... Thank you so much for having me. I was
it's called Commoner Quote, and it goes 01:21:13
happy to... I'm happy to be here. It was a great time.
it's called Commoner Quote, and it goes 01:21:16
Wonderful. And Sarah, do you have any... Are there ways that folks,
it's called Commoner Quote, and it goes 01:21:20
if they're interested in your work, any... I think that not at the
it's called Commoner Quote, and it goes 01:21:26
moment as much, I wish that I did, but actually,
it's called Commoner Quote, and it goes 01:21:29
like we've talked about today in wanting to not... Being the fact that
it's called Commoner Quote, and it goes 01:21:35
I receive services from the state and things like that, I've always been
it's called Commoner Quote, and it goes 01:21:40
careful about putting out my work in the sense of like,
it's called Commoner Quote, and it goes 01:21:45
I don't want people then thinking I'm making too much money off of
it's called Commoner Quote, and it goes 01:21:49
poetry, which you really don't. Right. But that shows the kind of fear
it's called Commoner Quote, and it goes 01:21:53
that the system instills in you, so now because I'm working on my
it's called Commoner Quote, and it goes 01:21:59
first poetry collection, I wanna start a website with my work,
it's called Commoner Quote, and it goes 01:22:03
so if that is up and running soon, then I will share the
it's called Commoner Quote, and it goes 01:22:08
link. Wonderful. And when that book comes out, we'll invite you back on
it's called Commoner Quote, and it goes 01:22:13
the podcast. That'd be awesome. Ha ha, rock on! Yeah. Alright. Well, thank