Hello and welcome to episode 8 of the podcast Tips and Tricks on How to Be Sick.
I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.
In this episode, we are having a conversation with documentary filmmaker Cheryl Green. Cheryl has a traumatic brain injury, or TBI, and she thinks that the TBI community and the wider disability community could learn from each other if they connect and share experiences. So today, Cheryl is going to share her experiences before and after acquiring her disability, the ableism she has found in the process, and how we can make things just a little bit better for people with intellectual disabilities, TBIs, and really, any disability that causes temporary or permanent cognitive impairment.
A few content notes for this episode:
- This episode was originally intended to go up in August. It is now the very end of December. My bad!
- There are some frank discussions of ableist language in this episode, including some specific examples.
And now let’s get to the conversation.
[Eirenne]
This month we’re going to be talking with Cheryl Green. Cheryl has a traumatic brain injury and some other stuff besides it. So let’s see what she’s got to say about dealing with the chronic phase of having a traumatic brain injury and the struggles of getting diagnosed with, well, anything else once you have The Big Diagnosis that is suddenly the cause of everything. Cheryl, welcome to the podcast.
[Cheryl]
Hi, thanks so much for having me. And thank you for that appropriately dramatic introduction, yes, that’s exactly what it feels like.
[Eirenne]
So can you tell us a little bit about your history and how you came to deal with the traumatic brain injury?
[Cheryl]
Sure. Let’s see, history. So I’m one of those people, I kind of- — people always want to hear disgusting, gruesome, terrible, tragic wreck story. People of all stripes really demand to hear that. I don’t usually tell a story like that. I’m more like an NFL player, I guess, in that I’ve had over 25 years of sports concussions, concussion from an assault, some of those are considered mild traumatic brain injuries because they had symptoms and problems that lasted for awhile. Some of them don’t seem to have any symptoms that last more than a couple of seconds, just concussions. But it’s really been many, many, many of them.
In 2010 there was one that was that was pretty substantial, although nothing that would cause a coma, but still a very substantial hit to the head. Everything had just accumulated, and with that hit I really acquired a lot of different kinds of impairments. Most of them are better, some of them are still lingering and hanging on for dear life, ‘cause I guess they really like me. But in the meantime, other conditions have become apparent that have nothing to do with TBI.
For instance, I was diagnosed with joint hypermobility syndrome, so potentially EDS but I haven’t gotten an official diagnosis from a specialist. But now my history of twisted ankles and knee pain for my entire childhood, and my jaw dislocating and my legs popping out of the socket, now it all makes sense. But that didn’t come until after acquiring disabilities from brain injury. And then, six weeks ago- — the timing of this show is just amazing. Because, six weeks ago, out of the blue, I have developed something new. They tried to do the “look for the horse, not the zebra” thing.
[Eirenne]
Ah, yes.
[Cheryl]
So they’re doing the testing, looking for the horse, and the horse would be something easy to fix, probably something that’s “just in your head.” But as it turns out, as they’re narrowing it down in the past couple weeks of testing, it might actually be in my brain. It might actually be a brain dysfunction that can be caused by head injury, but eight years later? I don’t think so. So we don’t know the diagnosis yet, because I’m still only a couple weeks into testing, but it’s very problematic and it’s very confusing, because what is causing it? What, what?! Anyway. It’s very uncomfortable and very painful.
[Eirenne]
I’m so sorry. Did they initially try to go, “Oh, no, this is just another symptom?”
[Cheryl]
Um, no actually. My doctor was either booked or out of town, so I just was slotted in with the first provider available who doesn’t know me, doesn’t know anything about my history. And she basically kind of pooh-poohed it.
[Eirenne]
Oh dear.
[Cheryl]
They did a little bit of the simple lab work, but she’s like, call your doctor in a week or two, you know, just follow up. When I called my doctor 10 days later and told her the symptoms, she’s like, uh-uh, more testing, right now. But even then, she was still looking for the simplest answer. When the symptoms continued for another couple weeks, despite medication, she’s now on the path of like, no, this is — we’re bringing in the specialist.
And it’s really intriguing for me, because you don’t want something serious. You don’t want a serious health condition, and yet when the doctor finally says, nope, we have to bring in the specialist, the relief. Like, I finally stopped crying and panicking, even though I still have the same symptoms and I’m very uncomfortable? I’m so much calmer, now that the doctors — the one doctor is validating that I’m not making it up, and it’s not caused by potentially a very simple, pedestrian, everyday thing. So it’s a weird contradiction; the longer the symptoms go on, the calmer I’ve started to get now.
[Eirenne]
Oh yes, that’s a feeling I know very, very well. I had a doctor who I expressed the “am I making this up, is this just a thing that I’m blowing out of proportion?” and he’s like, no, look. And he points at lab tests and and he points at other testing and he’s like see this? This is proving that there is a problem and you’re not making it up, you’re not blowing it out of proportion, and you need to pay attention when you have these problems and call me so that we can deal with it. And having that kind of validation is truly amazing, when so often we get dismissed and written off because we’re just, you know, the problem children.
[Cheryl]
Right, right. And the other thing that’s so interesting about this is that it is the opposite experience you usually have with TBI. This same doctor of mine, the one who’s finally wanting to fast-track this and figure it out, a few years ago I went in complaining that I keep dropping things. I pick things up and I drop them. They break. I dropped my cat, I dropped the dishes, it’s getting frustrating, this doesn’t make any sense. The cat was fine-
[Eirenne]
Because cat.
[Cheryl]
Because, cat! The plate was not fine, but that’s OK, I have more plates. So she did that simple, again starting with the simplest, most routine testing, which I think is great. She found there were no neurological symptoms. My strength was 5 out of 5, I have no numbness, no tingling, so no neurological symptoms, but she’s like, with your history of TBI, let’s do a brain MRI. Which, of course, sent me into an emotional tailspin. Oh my god, oh my god, my brain, my brain, oh my god my brain. Well, it turns out, no surprise, they couldn’t find anything on the MRI that would lead to me dropping things. So she just drops the case! I emailed and I said, look, lady, I’m still dropping the cat and the plates and money goes flying out of my hands, my fingers just pop open, what is this?
She sent me to the hand therapist, who was able to diagnose me before I even sat down at her desk to start the evaluation. Because she could see my wrists were so hyperextended, or flexed, whatever, they they were so floppy, the way I used my hands, the way I held my water bottle, set it down, the way I shook her hand, was so characteristic of someone with hypermobile joints. She did the evaluation, of course, but she told me, I think I know what we’re going to find. I was just, across the board, a super clean cut case of hypermobile joints. I did hand therapy for a few months and I drop things way less frequently now, and that’s good, but I still have a lot of wrist pain. Bending my wrists makes them very sore and tired.
But I was in a trap, until I advocated, until I bugged my doctor and advocated for myself, I fell into that trap. Rather, she put me in that trap of, “well, you have a diagnosed brain problem, so anything else that goes wrong with you must just stem from that. It’s not OK. It’s not appropriate. And when you have no neurological symptoms, I don’t know why you have to put someone through a brain MRI; it’s so stressful to go through that.
[Eirenne]
I’ve been through them, and they are very stressful. And you’re right; it is not OK for us, in general, to be siloed into “this is Your Problem and everything that you have that’s going on is part of Your Problem and we’re not even going to look further than that.” Although, I’m glad you had a therapist that could figure things out. I had a physical therapist who first identified my hypermobility long before any of my doctors saw it. So, yay for on-the-ball therapists!
[Cheryl]
Yep, that hand therapist was amazing. And one of my several physical therapists has been really amazing with it, too. Because I have to go in for physical therapy on different parts of my body, because they’ll get out of joint, or I’ll get chronic pain in one area for some reason – there’s probably a reason, I just don’t notice it. So I keep going back. But some of the physical therapists don’t get it, they’ve teased me and told me to try harder. The other thing, this physical therapist who does get it, you’ve talked about it on your show before, advocating — like, if your doctor’s not working out for you, and you can, dump ‘em and get one who can show some respect and knowledge.
But this one physical therapist who gets the hypermobile joints, he also gets the brain injury stuff. So sometimes I have a reflex response that’s very exaggerated, and that happened after the wreck in 2010. I will just jump more than I have to, and something that should hurt just a little bit really feels, for just a moment, like it’s excruciating, just for a moment. Then I’ll get worried or upset and he’ll say, you know what, it’s OK, it’s OK. That’s part of that chronic phase of brain injury sometimes, is that you’re just a little bit too responsive. You’re a little bit too much on alert, and that’s OK. You’re safe and it’s fine and we’re just working on this bone spur in your toe, it’s OK.
He has such a great way of — obviously he’s not going to say the bone spur came from the brain injury, but he understands the interaction of how brain injury disability can change your response and your perception of things, even though in this particular case, this thing actually is not brain injury. He’s- — Dan Cooper, you’re the best.
[Eirenne]
All right, yay Dan Cooper! So, did you have a pronounced acute period with your brain injury, before it sort of transitioned into the chronic, or has it always been sort of the chronic type with acute spikes, given that it’s been, as you said, 25 years of repeated sports injuries and other stuff?
[Cheryl]
I’d say both. There was always, over my life, it just — some things just sort of became ingrained in me. I can remember after one injury in specific that I completely lost my ability to understand figurative language. It’s very scary; you don’t realize how figurative we are until you can’t get it. That just sort of faded into the background, but has always kind of been there at a low level, like with sarcasm and jokes and figurative language. I’ve become very literal. It’s just sort of there. But the one in 2010, yes, there was absolutely an acute phase. I mean, it was horrific for a few weeks, but I’d say it was about 18 months where I was truly suffering in terms of the struggles I was facing and not having a good pattern of accommodations.
It’s very hard to make accommodations with brain injury, because you have to remember to use them, and you don’t remember to use them because you have a brain injury. Or, like, my speech therapist at one point said, you need to write down the steps of everything you do before you do it. Well that sounds like a great tip, except, come on, really? Like, standing up and getting out of bed? I’m supposed to write out the steps? Pouring a glass of water, I’m supposed to write out the steps? I didn’t know what she meant by “write the steps to everything” and so I didn’t write the steps to anything. I couldn’t distinguish which things should be written out and which shouldn’t. So I was constantly making mistakes and getting stuff done out of order, because I wasn’t writing out the steps, because I didn’t know when I was supposed to, and I couldn’t anyway. I really, for awhile, needed people to write the steps out for me.
I’d say that was about 18 months, and since then it’s just I’ve continued, impairment-wise, to have pretty consistent improvement on many things. Some things are just, like, really tenacious and hanging on there, like little lampreys hanging onto their rock. Very tenacious. I’d say it’s been at low level chronic for several years now, but that the only time it was really acute was the last, I’d say, four injuries that I had, starting in 2010 and a few more after that.
[Eirenne]
OK. So, do you have a variety of different doctors that you have to deal with, with this? With, specifically, the brain injury? Or is it just like, you have the doctor who deals with the brain injury stuff and everybody else is sort of just satellite and dealing with it sort of adjunctly?
[Cheryl]
Can I first just say I love that you didn’t say “go to doctors” you said “deal with doctors,” I love that. Little secret language, secret spoonie language. So, at this point, it’s pretty much I just see my general doctor for stuff, and the physical therapists when things get out of whack, but in the early days, yeah. I had the doctor, but then I had the speech therapist, I had the vision therapist because my eyes were not pointed in the same direction. I actually had a lot of different visual processing dysfunctions, quite a few. I had the neuro-optometrist and vision therapist, totally separate. I had the occupational therapist, the physical therapist. I saw the neurologist for seizures. And then, when things sort of settled down and I had done a lot of rehab and, like you said, kind of settled into that chronic phase, then I got a physiatrist, whatever that means. Now I’ve really just graduated to only seeing the general doctor and physical therapist.
Eirenne]
Physiatry is a pretty interesting specialty. It’s the ones that study and deal with how the body moves and works. They’re frequently sports medicine doctors. It’s sort of like the physician equivalent of physical therapists. They’re the doctors who get that on sort of the deepest levels-
[Cheryl]
Ostensibly!
[Eirenne]
Ostensibly, yes. I’ve dealt with a physiatrist for mobility aids, and actually I’m going to see the same one for non-medication pain control/pain management stuff. So physiatry will also sometimes do pain management.
[Cheryl]
OK. OK, I think I was seeing the physiatrist for the chronic fatigue — I don’t actually have Chronic Fatigue Syndrome or have a diagnosis, it’s a brain injury fatigue. I don’t know how different it is from ME, but it’s its own thing. But of course, then I ended up as you do when you have EDS and you get sick and you get out of condition, I developed POTS a couple of years ago. But I don’t think that I was still seeing my physiatrist at that point. No, I wa- — I don’t remember; I think I was. So the physiatrist was really trying to work with me around blood pressure and fatigue, and my brain injury fatigue had actually gone away for quite some time. But then I got just a garden variety upper respiratory infection, spent too long in bed- — well, it wasn’t garden variety, I was really sick for a month. Nothing life threatening, but I was in bed for so long I got deconditioned and that’s when the POTS came on.
[Eirenne]
I’ve been there — approached from my own sort of angle, of course, not having a brain injury, myself. I’ve done the Thing X puts you in bed for an extended period of time, and being in bed for an extended period of time brings on a whole host of other problems, like having your blood pressure go wonky when you finally are up and moving again.
[Cheryl]
Yep. It has been — and it’s really stressful, too, because you try to tell your doctor that you keep passing out, and they’re like, well I don’t know why a brain injury would make that happen five years later. I’m like, because it’s not. It’s not the brain injury doing that. But I also have this other thing where sometimes I lose my vision when I turn my head, like what? How does that happen, years after a brain injury? My optometrist got so frightened she sent me to the neurologist, who got even more frightened and then sent me to the neurosurgeon. I had to get a cerebral angiogram, and they’re like, well, I don’t know. You’re fine; whatever it is, it’s not going to kill you. That’s basically what this neurosurgeon said. So nobody knows why I sometimes completely lose my vision, and it’s not — it’s sometimes connected to like a POTS feeling of passing out and sometimes it’s not.
But they gave up. And this is what has happened, and this happens with TBI all the time, especially if you’re not with a TBI specialist. Doctors simply give up. I’ve had a doctor erase a diagnosis out of my chart because she didn’t know what to do with it. She’s like, we’re just going to take this one off. If you’re not seeing specialists, if you don’t have good health insurance, or you live in a place where you don’t have access to specialists, or you don’t have transportation to get to specialists, you just have this string of things and people just go, I don’t know what would cause that. And they just drop you. It’s really kind of grotesque; it’s really sad.
[Eirenne]
You can’t see it, but I’m cringing horribly. I know exactly what you’re talking about and it’s always just horrendous to think about. The idea of we have to advocate for ourselves so strongly when we’re at our most vulnerable and least capable of advocating for ourselves.
[Cheryl]
Exactly! That point right there kind of directly leads to the biggest tip I would ever give to people with brain injury, and I’ve never heard anyone in the brain injury community say this, so I’m going to say it now. And that is: if you have a brain injury, one of the first things that you should do when you are able to, is meet people with other disabilities. Preferably people who have had disabilities for a really long time. You need to do that straight up, because everything I’ve said today, you’ve said yep, me too, I know exactly what you’re talking about. Because you do.
There’s a lot of rhetoric in the TBI world, from doctors, from survivors, from peers, all over, people who say “nobody gets it like somebody else with TBI, nobody will ever understand you.” And while, maybe you can’t relate to some of the cognitive impairments and the visual processing impairments I’ve faced, and some of the different other things I’ve faced and other peers with TBI, but on the larger sense, you completely get it. Because you have been there, you know exactly what it feels like to have to learn this new way of living, learn the accommodations, advocate when you’re vulnerable, be shuffled around with doctors.
And I cry, I feel so heartbroken when the ableism goes unchecked. People with TBI don’t want to identify with disability community, don’t want to identify with disability rights, disability culture. They don’t want to learn the definition of ableism. They don’t want to communicate with people outside of TBI support groups, because they’re encouraged not to, to be fair. We’re missing out on so much support, so much information, so many ways to become proud of yourself again. Ways to say, you know what, I’m sick, I’m in pain, I’m having problems, and I am proud of who I am, and I am a great person, and I am not inferior because I’ve acquired disabilities. That’s not part of the TBI recovery trajectory, is to love the disability community. I think it’s tragic! Because we are so separate, and we keep ourselves from so much valuable information about advocacy and self love and community love and fighting ableism. So, cheers to what you said.
[Eirenne]
So, essentially people in the TBI community are encouraged to think of themselves as “normal” but with an injury, as opposed to someone who is now disabled?
[Cheryl]
Yeah! So, the term typically used is “new normal. Accept your new normal.” So there is an element of acceptance in that, like OK, I’ve got this impairment now and I need to accommodate, OK, moving forward. But the insistence on calling it “new normal” without realizing it, if you don’t really pay attention to it, you’re still reinforcing that idea of “normal” being what you want. And I think that — but whatever, you can argue linguistics forever and never come to any conclusion because words are symbols and so why would we say that words are things, they’re not, they’re symbols. We’ll never agree on exactly what they mean.
The bigger issue is that the TBI world is very medicalized. It’s very much you go to your doctors, you go to your support groups, you try to get as normal — you try to get back your old self as much as possible, and when you reach the limit on that, you accept your new normal. A lot people really advocate looking at TBI as a gift, looking at your impairments as superpowers, and special, and differently abled, and all of these things that have a very positive intention, but they’re not addressing the ableism that underlies the self-hatred and the self-loathing and the embarrassment of having a cognitive impairment.
We should not be embarrassed by cognitive impairments. We should not rank people by their cognitive skills and their intelligence and their capacity to work 40 hours or not. As long as you still think people with cognitive impairments are inferior, and then you get one from the TBI, if you’re not going to change your view of other people then you’re going to have to start using all these euphemisms and say no, TBI is a gift and I love this and my new normal is, you know, special.
It is a struggle. I mean, I don’t begrudge the TBI community, I see where this is coming from. But I think if the TBI community would embrace the larger disability culture, and disability politics and disability pride? I think we would have less pressure on ourselves to use words like normal. Instead of setting all the goals of getting your IQ back to where it was, and getting back to work, there would be so much less stress and pressure in a scenario where there’s already too much stress and pressure, because you’ve got these impairments that are difficult to deal with.
[Eirenne]
Yeah. When the focus is entirely on recovery, because not recovering means that you are somehow, in some way, less than you were or less than other people, that really does limit you in what you can do and how you can see things.
[Cheryl]
That is — yes. You are so much more succinct than I am; that is exactly what I’m getting at.
[Eirenne]
I went through a phase of that with my own adjustment, and so I get it in part, at least. The idea of, no, if I can just get through this I can recover and I can be like I used to be. And that’s not ultimately a healthy way of looking at things, once it’s become abundantly clear that this is a chronic thing that’s not going away now. There’s a difference between I broke my wrist and once the bones heal and I rehab the muscles there’s going to be no appreciable difference to how it was pre-break, and developing an all-encompassing issue that changes everything about your life. Those are two different kinds of scenarios and in the first one, yes it makes sense to focus on recovery and getting back to how things were, and the second one not so much.
[Cheryl]
Absolutely! And I mean, I am all for rehab, believe me. I dropped out of most of my rehab, but part of that was my distorted thinking and the impairments I had at the time; I wasn’t a great judge of what I needed. Also, my rehab clinicians were super, super gnarly ableist and nasty to me. And I just said my thoughts were distorted, but I’ve got chart notes that back this up. The unreasonable things they were doing, and the way they were treating me.
But that aside, I’m a huge fan of rehab, I’m a total fan of people saying I’m going to get back as much as I can. I’ll be myself again, or I’ll be a different somebody; I’m all for that. What I would like to see, and I don’t know that this will come from rehab clinicians, so this is a tip person-to-person. What I would like to see is, at the same time that you’re going through rehab, that you’re getting constant reinforcement that it is OK to be a person with a disability or with an impairment.
It is not embarrassing to ask for help. You are not a burden if you need something, ever. And what disabled people need is not special. You don’t have special needs, you’re not a ‘special person’ – you are a person who has a specific need around your disability, and maybe that need will change, maybe you’ll continue to rehab and you won’t need that thing anymore. But that’s not a reason to post a video on Facebook and say you’re a great person and the rest of them suck because they didn’t think positively enough, and aren’t you great because you don’t need that pesky wheelchair anymore. Like, we hate these signs of impairment so much, and even mobility aids, and we lust for normalcy to this degree that if you’re not getting better at a really fast trajectory, it’s easy to hate yourself. The doctors blame you; I had plenty of doctors say I don’t know why you’re not getting better. Like, well why don’t you help me more? I don’t know. But also — how is that helpful to tell someone, I don’t understand why you’re not getting better fast enough?
So I think we need whatever rehab you want, I want everyone to have as much access to rehab as they want, which I know is not possible because we don’t have single payer health care, anyway. And access, you know, transportation, and finances, and getting there. But I also want people to say, you know what, I grew up thinking it would be terrible to have a disability, and that’s a lie, and that’s wrong. Even just that, even just a statement like that, and pointing yourself in the direction of, oh, that’s ableism, I grew up learning ableist lies, and I want to unlearn them now. While you’re doing your rehab, it would just be so- — there are actually, I have no words to describe how much improvement there would be if people didn’t hate disabled people and hate the idea of disability.
[Eirenne]
This is an absolutely fascinating look at a way I hadn’t considered these things. I’ve mostly dealt with joint sorts of injuries and muscle, soft tissue kinds of things. And the way that rehab is around that, but the sort of more systemic problems that can come from a brain injury, it makes sense in a sort of terrible way that this kind view, this kind of ingrained ableism would come through even more in something like that. Because our society, in general, looks down on people who have cognitive impairments, regardless of how they get them.
[Cheryl]
Exactly! And communication impairments. Communication is very often impaired in a million ways. That’s not technically accurate; there are so many different ways that communication can become impaired after brain injury. And think about it; what is just the best way to insult someone, or say you disagree with them? It’s to say they’re stupid, they’re dumb, you throw the R word on them, you say something like, “did I stutter? Why don’t you understand me, are you stupid?” I mean we, rather than face issues head-on and say, you know, I disagree with you, let’s unpack our values and why we disagree. We just say everyone we disagree with is just stupid. You’re a moron, you’re the R word, you’re crazy, you’re insane.
And communication impairments, mental health concerns, extreme mental health distress, and cognitive impairments happen to nearly everyone whose got TBI disabilities. Not just after concussion, but if you’ve got disabilities from TBI, nearly everyone is going to have some or all of those, and those are just the quickest knee-jerk insults we have, the way to knock people down a notch. And now you’re knocked down a notch; now you’re that person. Well, instead of hating yourself for having a communication impairment, yeah, just decide — just, that’s not fair — but you can learn to decide that people with communication impairments are equally valid people. I’m on a crusade!
[Eirenne]
It’s nothing about your value as a person, the fact that this is now a part of your life. That doesn’t change your value as a person, and your worth to the people around you who love you, or your worth to yourself. Or, it shouldn’t.
[Cheryl]
Right.
[Eirenne]
Obviously it does, to a lot of people, but it shouldn’t change the value you see in yourself.
[Cheryl]
Absolutely. I wish, as a culture, we could get on board with it, because it would make rehab and recovery so much easier if you didn’t have that pressure, because those are substantial impairments and there are people with TBI who will have communication impairments, whether it’s the way they’re speech sounds, or the way they understand or use language, or staying on topic or not. Some people will have issues and struggles with that for the rest of their lives, and I can promise you they will be made fun of on a regular basis when they leave the house. What kind of life is that? Is that the TBI’s fault? No, that’s our ableist behavior that’s causing the actual issue there. I’m with you; I don’t hear other people really talk about this either, because we are such a very medicalized community, and I want us to embrace both: the medical healing and the emotional and spiritual healing that comes from dismantling ableism.
[Eirenne]
I am so glad that you were able to come and talk to us and tell us these things, because as we’ve said, this isn’t a thing that gets talked about in this context. And it’s so important to think about it, not just within the disability community but in the world in general. We talk all the time about how disability is the one minority group that anyone can become part of at any time, because you’re really just one bad day and major problem from developing your own issues. Unpacking and unlearning this kind of stuff would make all of that so much easier. Acquiring disabilities doesn’t need to have that extra added Layer of Suck that is this kind of internalized ableist narrative.
[Cheryl]
I want — my next documentary film, that last sentence you said — thank goodness this is recorded and will be transcribed, because I already forgot it — but that sentence you said, I want that to be the title of my next film. It’s a little long, but it’s perfect. That’s the title of my next documentary.
[Eirenne]
Thank you, that’s awesome!
[Cheryl]
No, thank you!
[Eirenne]
So, to sum up. If you could give the top two or three quick tips to somebody who has developed a TBI and is moving into the chronic phase of it. We’ve covered talking to people in the larger disability community and trying to unlearn the ableist narrative that our society puts on all of us. Is there any other kind of top tip you would add to those?
[Cheryl]
Oh boy. I do think that acceptance is a really substantial thing. And acceptance where you really feel it in your bones and in your joints, even if your joints are floppy like mine and you have terrible proprioception, you don’t even know where your joints are. Feeling it deep down means it — wait, hang on, I totally lost what I was saying because I made a joke about floppy joints. Um. [laughing]
Acceptance, yes. What I mean by acceptance is recognizing that fighting your impairments will help nothing. So accepting, OK, I have impairments. And accepting that you may or may not improve. And accepting that you may or may not benefit from some accommodations, and you may or may not remember them every time, and just going, oh, OK. OK. You know, really being at that point where it is OK to be you, and it’s OK to be you in the world. And accepting the fact that people are not going to get it, and they’re going to demand a lot of icky stuff from you, and they’re going to demand that you act like you’re better because you look fine now. And trying to roll with that as much as possible, I think is a big thing.
Another quick tip is really love accommodations and ask for them as much as you possibly can, and when they’re not given to you, ask for them again. I think people get really embarrassed, asking oh, would you please write that down because I’m going to forget, or would you please speak more slowly because I got lost, or let’s go to a quiet place. When people are embarrassed by that and feel like a burden, then they don’t get their needs met. So I would say that seeking and demanding accommodations be met is a big important part for you to be able to get your stuff done, whether your impairment goes away or not. Accommodations are beautiful, they’re not gross. Those are two tips, I don’t know if you need more?
[Eirenne]
That’s perfect. And that’s a tip that anybody who has a disability of any kind can benefit from. Because we’re so often encouraged to downplay our problems and downplay the specificity of our needs — because as you said, we don’t have special needs, we have the same needs as everyone else. We just have specific requirements on how to get those needs met.
[Cheryl]
Yes!
[Eirenne]
And not being embarrassed by using those accommodations, or asking for them so that you can use them is a big step in making life a lot easier and a lot less frustrating. Cheryl, thank you so much. This has been an amazing conversation, and this is going to be so helpful to so many people.
[Cheryl]
Oh my gosh, well thank you. I love your show and it was such an honor to be on it, I really appreciate it.
[Eirenne]
If you have any social media you want to plug here, any projects that you would like to tell our listeners about, go for it.
[Cheryl]
My website is WhoAmIToStopIt.com, and that is named after my documentary film, Who Am I to Stop It, about isolation, art, and transformation after brain injury. I’m on Facebook and Twitter, I’m also @WhoAmIToStopIt, although I don’t really know how to use Twitter, so it’s not that worth following me, because I’m not there very often. But I’m on Facebook, WhoAmIToStopIt. Uh, projects.
Also I would love to plug — I have my own podcast, but I really want to plug the [Disability Visibility Podcast]. I am a producer on that phenomenal podcast by Alice Wong. It is a really intersectional look at disability rights, culture, media, art. It’s pretty cool, so just plugging that, there. You can find my audio editing, as well as I transcribe every episode for the podcast.
I also, coming up in August, at some point this month, the [Center for Disability Rights in New York state in Rochester has their Free Our People film contest], and my film called — it’s an anti-institutionalization film contest and festival. I took first prize last year for a film- — I forgot the name of it. Oh, called [In My Home]!. Ah, I forgot my own film. [laughter] This year I took third prize and it’s going to premier at some point in August, I can’t remember, and it’s called [After Fairview]. I interviewed a survivor of Fairview, which was, they called it a residential training center, but we all know it as a warehouse for people with developmental disabilities. So that’s coming up in August, so once the screening happens all the prize winning films will be available, hopefully freely, online for anyone. Those are all captioned and audio described, as well. So yeah, but all of that lives at WhoAmIToStopIt.com.
[Eirenne]
I am so excited to get to see all of that. The Disability Visibility Project is one of my favorite podcasts. I usually save the episodes, that I can binge them while I go shopping. I love to listen to it and it’s a great podcast. So yes, everybody should definitely check that out.
[Cheryl]
Oh, that’s so great, yay! So you’ve heard my editing magic. My own podcast — that one is interview-based, my own podcast is a little more artsy-fartsy and, you know, shorter episodes, and yeah, just artsy-fartsy. But Alice, Alice is just — she’s the best boss I’ve ever had. Alice, you’re the best boss I’ve ever had. And it’s a great show, so it’s an honor to be working with Alice.
[Eirenne]
All right, thank you so much, Cheryl.
[Cheryl]
No, thank you, Eirenne!
And that, my dears, is the end of season 1 of Tips and Tricks on How to Be Sick! We’re working on some new stuff for season 2, including revamped artwork from [karaburrito], a new YouTube channel of the episodes, if you’d prefer to consume your podcast goodies in that format, as well as some options to support the podcast.
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Tips and Tricks on How to Be Sick 