The Day My World Turned Upside Down
In the fall of 2017, I took a class in Disability Studies.
I took this class, in part, to find ideas and tips for how, "they" managed.
They.
They managed.
How people with disabiltiies--who weren't me, because I wasn't disabled (feel free to insert eye-roll here, because when looking back on myself at this time, I totally do!). Not me.
Them.
This is actually funny, because I had been diagnosed with ADHD years ago, when I was 24. I had been using the Academic Achievement Center on campus for both ADHD and my chronic illness. Yet somehow people with disabilities (or depending on how much people choose to identify with their disability, disabled people) were other. They weren't me.
I remember, the night before our second class, reading the work by Dr. Linton, which included a large section on invisible and chronic illness. Even then, I thought to myself, "but that can't be me, mine's not (insert air-quotes here) serious enough." Even as the work focused on the many barriers, actual physical barriers in the case of some built worlds and disabilities, and many barriers in our policies and institutions and even as so many of the things I experienced fit within her descriptions. It wasn't really until mid-way through class during that second class period and hearing from someone else in the class who had an invisible disability, that it finally hit home. This was me, this was my life. I was disabled.
Somewhere it began to dawn on me how much different my life would have looked if the built worlds I had been in contact with had been built with people with disabilities, and in my case, people with chronic illness in mind.
I can remember sitting with a Professor who was the chair of the department, (not my piano professor at the time) during a semester that I would have gotten an A in my private piano lessons, for the work I had done based on my piano professor's assessment of my work, except I had not been able to get to 10 recitals, which at that school, meant that I would get an F.
I remember telling him (the department chair) that my doctor was having me tested for a slowly bleeding ulcer and that I would get documentation to him as soon as I knew the results of the test. The upshot of that meeting was that it wouldn't matter, the documentation would not matter. In his mind, he just hadn't, "seen enough effort." I had worked my rear end off on the first movement of the famous Grieg Concerto in A Minor.
Didn't matter. I remember then being so sad and angry because I knew that if he was waiting for the results to see if he had a slowly bleeding ulcer, he wouldn't have been in that office at all. He would be home in bed.
None of the work that I had done mattered. None of the recitals that I had been able to get to mattered. Or the practice, work, and improvement I had done mattered. Or that I was putting my mind and body through hell trying to fulfill the criteria that was designed for healthy people and had little ability to handle or address people like me. I was given an F.
Not enough effort. Even though I put more effort in trying to meet the requirements while sick that healthy students put in to complete them.
That is just one example of many.
Before I learned to work within my limits, before I learned how to self-advocate, and to challenge the refrain of "but it wouldn't be fair to everyone else...", before I learned that the shame that I felt around having health issues (that our culture teaches us) that sometimes needed absences, extensions, or other accommodations often contributed to less effective advocacy when I would try and seek necessary accommodations, before all of that, my academic record bears witness to the overstretching of myself and my limits. Once my ADHD was treated but before chronic illness addressed, I would get A's in two or three of my classes, and the others depended greatly on the difficulty (read here: how much time, energy, and extra ability I had to devote to them). I did well, but never up to my true ability level.
Even before this class, I had learned to self-advocate. I learned to hold my head up and act confident when coming to professors before the deadline to ask for an extension so that I could stay within my limits and give them work up to my level. I learned to hide the shame I felt inside when presenting doctor's notes for the absences and asking for the things I needed to be able to get and stay caught up.
Feeling shame surrounding my body's need for rest, for my immune system, for my body needing way more time to get over some kinds of illnesses, for the way that my body is and works had been part of my daily architecture for years.
Until that class, when I really started to understand the structure of our world is not built for people who are not typically healthy. That every failure, every day that I had come home exhausted after only being able to do 3/4 maybe, of what everyone else did, that this was not my fault for not having enough 'inspiring" willpower to work through, it was not my fault for being lazy, or weak-willed. (If anybody has any questions on my willpower or grit, ask me in person, and I'll be happy to fill you in on how I was training regularly three days a week during flagrant malabsorption after experiencing cachexia, before we knew what was happening. It was grueling and literally was likely responsible for a huge portion of my deterioration. But the head of the program I was in at the time had made it clear--without saying so in so many words--that continuing to give me a chance was conditional on demonstrating that I could show the "willpower" and the "discipline.")
And so on that day in class, it really hit me in a rush, how little credit I have given myself, and how much undeserved shame and blame I had carried with me over the years. Once you see how few spaces are built to be accessible to the larger electric wheelchairs, and truly give them the radius they need to be able to turn around in, once you see how few spaces make clear contrasts between important visual markers, such as curbs with a step, or a stair or two, or even meeting room numbers using bright colors and high contrast easy for people who are not completely blind, but yet still have a great deal of limitation in their vision to see these important designations, it is easier to make the transition to see how our academic, social, and occupational worlds are not built for people whose bodies don't work like everyone else's, and more specifically related to my experience, especially those whose bodies don't carry a highly visible marker of their difference.
Finally I begin to see that it was not me that was "wrong", as I had felt for so long. My body and abilities are as they are did not make me bad or a failure as a person. Obviously, I do my best to work with them. But the fact that I can't do what "everyone" else can (realizing how the fact that I am saying everyone here, erases all the people with disabilities, just how our culture does that and that I need to change the way I think and speak about that) has so much less to do with my individual body and diagnoses, and a lot more to do with the way our society is built that discourages active participation by invisibly disabled people. Especially because there is this perception that if we don't police the heck out of people seeking and using accommodations, there will be hordes of students and employees, trying to "game" the system by asking for them (perhaps because they still don't get how much shame is still involved in admitting in our ableist culture that you aren't "able" to go all the time, and do all the things, and give 150 percent 27 hours a day and yes, that 27 was intentional!)
It is all these barriers for example, in rigid attendance policies, rigid deadlines, rigid demands for all kinds of extracurricular work, and outside observations that were expected when I was physically unable to do them that create the exclusions. And the thing is, with a small amount of flexibility on the part of employers, workplaces, schools, and professors these exclusions can be eliminated and replaced with inclusion (for example, a Professor with insight could have suggested when I couldn't meet the deadline years ago for an outside observation that instead of giving me an F on that assignment, that we simply arrange similar observations over Skype or Zoom, that I do two of them for the next assignment to cover the one I missed, and that way work within my limits and within the bounds of the assignment, without penalizing me for health issues beyond my control).
It is this kind of flexibility in working with PWD's (especially those of us with invisible illnesses whose bodies and needs can be so variably different from day to day and from each other) that literally could make the difference between a student who is dismissed from higher-level work, or a demanding job that they love, or a student/employee who flourishes and is able to contribute with their gifts and talents. Yes, I keep using the word gifts and talents, because these are so commonly overlooked or downplayed.
So on the day my world turned upside down, I met with the professor after class, in kind of a disbelieving state, like, "so could I actually be disabled? could I actually 'count' as having a disability?" His patience in not just coming out with a resounding, "well, duh!" is to be highly commended. As well as his understanding that whether or not I chose to identify to myself, in this moment, to anyone else, forever, all of these were decisions that were mine to make and that I was still very much applying a medical model to it. Did I mention he was very patient? He did have a skill for gently pointing me towards the obvious.
After that conversation was when I first begin to buck the usual trend of the invisibly disabled. I began to self-identify because I don't want someone coming after I have been through, with the talents and gifts that I have (or very different but still incredibly valuable), to have to be nearly 40 before discovering how to marshal her resources, her body, and her gifts and talents towards traditional educational and job participation in this culture.
It was the world of possibilities of inclusion that opened up to me that day as well. Of how a little creative and flexible thinking applied to these traditional barriers to participation could open up so many possibilities for participation for me, even when we still are so far behind ideals of universal design. But more on Universal Design later.
My world did turn upside down, because I saw a new world, a new freedom, without the shame and localization of the problem of disability being laid at my door for having an atypical body and diagnoses. I saw this new world not just with the need for more inclusion, but also, the freedom that a systemic look gives you in coming up with new and creative solutions for participation. I saw, for the first, time, the possibility of it!
I took this class, in part, to find ideas and tips for how, "they" managed.
They.
They managed.
How people with disabiltiies--who weren't me, because I wasn't disabled (feel free to insert eye-roll here, because when looking back on myself at this time, I totally do!). Not me.
Them.
This is actually funny, because I had been diagnosed with ADHD years ago, when I was 24. I had been using the Academic Achievement Center on campus for both ADHD and my chronic illness. Yet somehow people with disabilities (or depending on how much people choose to identify with their disability, disabled people) were other. They weren't me.
I remember, the night before our second class, reading the work by Dr. Linton, which included a large section on invisible and chronic illness. Even then, I thought to myself, "but that can't be me, mine's not (insert air-quotes here) serious enough." Even as the work focused on the many barriers, actual physical barriers in the case of some built worlds and disabilities, and many barriers in our policies and institutions and even as so many of the things I experienced fit within her descriptions. It wasn't really until mid-way through class during that second class period and hearing from someone else in the class who had an invisible disability, that it finally hit home. This was me, this was my life. I was disabled.
Somewhere it began to dawn on me how much different my life would have looked if the built worlds I had been in contact with had been built with people with disabilities, and in my case, people with chronic illness in mind.
I can remember sitting with a Professor who was the chair of the department, (not my piano professor at the time) during a semester that I would have gotten an A in my private piano lessons, for the work I had done based on my piano professor's assessment of my work, except I had not been able to get to 10 recitals, which at that school, meant that I would get an F.
I remember telling him (the department chair) that my doctor was having me tested for a slowly bleeding ulcer and that I would get documentation to him as soon as I knew the results of the test. The upshot of that meeting was that it wouldn't matter, the documentation would not matter. In his mind, he just hadn't, "seen enough effort." I had worked my rear end off on the first movement of the famous Grieg Concerto in A Minor.
Didn't matter. I remember then being so sad and angry because I knew that if he was waiting for the results to see if he had a slowly bleeding ulcer, he wouldn't have been in that office at all. He would be home in bed.
None of the work that I had done mattered. None of the recitals that I had been able to get to mattered. Or the practice, work, and improvement I had done mattered. Or that I was putting my mind and body through hell trying to fulfill the criteria that was designed for healthy people and had little ability to handle or address people like me. I was given an F.
Not enough effort. Even though I put more effort in trying to meet the requirements while sick that healthy students put in to complete them.
That is just one example of many.
Before I learned to work within my limits, before I learned how to self-advocate, and to challenge the refrain of "but it wouldn't be fair to everyone else...", before I learned that the shame that I felt around having health issues (that our culture teaches us) that sometimes needed absences, extensions, or other accommodations often contributed to less effective advocacy when I would try and seek necessary accommodations, before all of that, my academic record bears witness to the overstretching of myself and my limits. Once my ADHD was treated but before chronic illness addressed, I would get A's in two or three of my classes, and the others depended greatly on the difficulty (read here: how much time, energy, and extra ability I had to devote to them). I did well, but never up to my true ability level.
Even before this class, I had learned to self-advocate. I learned to hold my head up and act confident when coming to professors before the deadline to ask for an extension so that I could stay within my limits and give them work up to my level. I learned to hide the shame I felt inside when presenting doctor's notes for the absences and asking for the things I needed to be able to get and stay caught up.
Feeling shame surrounding my body's need for rest, for my immune system, for my body needing way more time to get over some kinds of illnesses, for the way that my body is and works had been part of my daily architecture for years.
Until that class, when I really started to understand the structure of our world is not built for people who are not typically healthy. That every failure, every day that I had come home exhausted after only being able to do 3/4 maybe, of what everyone else did, that this was not my fault for not having enough 'inspiring" willpower to work through, it was not my fault for being lazy, or weak-willed. (If anybody has any questions on my willpower or grit, ask me in person, and I'll be happy to fill you in on how I was training regularly three days a week during flagrant malabsorption after experiencing cachexia, before we knew what was happening. It was grueling and literally was likely responsible for a huge portion of my deterioration. But the head of the program I was in at the time had made it clear--without saying so in so many words--that continuing to give me a chance was conditional on demonstrating that I could show the "willpower" and the "discipline.")
And so on that day in class, it really hit me in a rush, how little credit I have given myself, and how much undeserved shame and blame I had carried with me over the years. Once you see how few spaces are built to be accessible to the larger electric wheelchairs, and truly give them the radius they need to be able to turn around in, once you see how few spaces make clear contrasts between important visual markers, such as curbs with a step, or a stair or two, or even meeting room numbers using bright colors and high contrast easy for people who are not completely blind, but yet still have a great deal of limitation in their vision to see these important designations, it is easier to make the transition to see how our academic, social, and occupational worlds are not built for people whose bodies don't work like everyone else's, and more specifically related to my experience, especially those whose bodies don't carry a highly visible marker of their difference.
Finally I begin to see that it was not me that was "wrong", as I had felt for so long. My body and abilities are as they are did not make me bad or a failure as a person. Obviously, I do my best to work with them. But the fact that I can't do what "everyone" else can (realizing how the fact that I am saying everyone here, erases all the people with disabilities, just how our culture does that and that I need to change the way I think and speak about that) has so much less to do with my individual body and diagnoses, and a lot more to do with the way our society is built that discourages active participation by invisibly disabled people. Especially because there is this perception that if we don't police the heck out of people seeking and using accommodations, there will be hordes of students and employees, trying to "game" the system by asking for them (perhaps because they still don't get how much shame is still involved in admitting in our ableist culture that you aren't "able" to go all the time, and do all the things, and give 150 percent 27 hours a day and yes, that 27 was intentional!)
It is all these barriers for example, in rigid attendance policies, rigid deadlines, rigid demands for all kinds of extracurricular work, and outside observations that were expected when I was physically unable to do them that create the exclusions. And the thing is, with a small amount of flexibility on the part of employers, workplaces, schools, and professors these exclusions can be eliminated and replaced with inclusion (for example, a Professor with insight could have suggested when I couldn't meet the deadline years ago for an outside observation that instead of giving me an F on that assignment, that we simply arrange similar observations over Skype or Zoom, that I do two of them for the next assignment to cover the one I missed, and that way work within my limits and within the bounds of the assignment, without penalizing me for health issues beyond my control).
It is this kind of flexibility in working with PWD's (especially those of us with invisible illnesses whose bodies and needs can be so variably different from day to day and from each other) that literally could make the difference between a student who is dismissed from higher-level work, or a demanding job that they love, or a student/employee who flourishes and is able to contribute with their gifts and talents. Yes, I keep using the word gifts and talents, because these are so commonly overlooked or downplayed.
So on the day my world turned upside down, I met with the professor after class, in kind of a disbelieving state, like, "so could I actually be disabled? could I actually 'count' as having a disability?" His patience in not just coming out with a resounding, "well, duh!" is to be highly commended. As well as his understanding that whether or not I chose to identify to myself, in this moment, to anyone else, forever, all of these were decisions that were mine to make and that I was still very much applying a medical model to it. Did I mention he was very patient? He did have a skill for gently pointing me towards the obvious.
After that conversation was when I first begin to buck the usual trend of the invisibly disabled. I began to self-identify because I don't want someone coming after I have been through, with the talents and gifts that I have (or very different but still incredibly valuable), to have to be nearly 40 before discovering how to marshal her resources, her body, and her gifts and talents towards traditional educational and job participation in this culture.
It was the world of possibilities of inclusion that opened up to me that day as well. Of how a little creative and flexible thinking applied to these traditional barriers to participation could open up so many possibilities for participation for me, even when we still are so far behind ideals of universal design. But more on Universal Design later.
My world did turn upside down, because I saw a new world, a new freedom, without the shame and localization of the problem of disability being laid at my door for having an atypical body and diagnoses. I saw this new world not just with the need for more inclusion, but also, the freedom that a systemic look gives you in coming up with new and creative solutions for participation. I saw, for the first, time, the possibility of it!
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