Writing Where It is Difficult
In class the other day, one of our guest panel speakers asked four questions, and asked us to raise our hands if the answer was yes. These questions often are part of measures of inclusion and can be used to reveal barriers to access.
He asked the first question, "How many of you are working?" Many, if not most hands went up. Mine did not because most of the jobs out there that I qualify for with the education that I have either require more physical labor than I can do, or more hours than I can do and stay within my limits while balancing my studies. So my hand stayed down and for a few minutes the shame of being my age and not "working" made it difficult to meet anybody's eyes for the next few minutes. Then he asked the second question. How many of you own homes. A few hands went up, mine did not. Because I am still single at this point, I will consider buying a home whether or not I'm coupled up in the future when my finances are more secure, but right now home-buying is simply out of the question.
So then he asked the next question,"How many of you are married?" Some hands went up. Mine obviously, did not. At this point my heart was falling to the floor, because I was beginning to put this list of questions together with articles we had read for policy class talking about measures of mobility and access that includes consideration of many of these sorts of questions.
For the first time, I really began to see outside of the difficulties, discrimination, and barriers I have faced academically and in the workforce (yes I have tried through the years!) and how much my disability either shuts me out of, or makes access much more difficult. Just consider your own thoughts as a healthy person (if you are) on dating someone who you know going in is ill, and will always to some degree be ill. Whose grandmother was ill, and who has other relatives also ill, and the questions people would ask, and the assumptions they would make. The assumptions that you would make, and whether you even would.
The last question, was who had a significant other at the time, and again, my hand stayed down. I've known for awhile that chronic illness can make dating life more difficult, and that though my finances will likely be okay in the end, that these four question really made me put together all of the areas of my life affected (academic, occupational, and social).
Another issue though that likely has impacted my course and history, is that I am a woman. Because the intersection of these identities--having an invisible disability, and being a woman--combines with an unfortunate cultural problem in the medical community right now. Women's symptoms are often overlooked, dismissed, or attributed to mental problems (this happened to me, first time I went in with pain was when was maybe eleven years old. First time they actually did some tests that had a chance of seeing what I had was when I was in my thirties). But this intersection with my identities (invisible disability and being a woman) also interacted with the academic environment which demands diagnoses of a definite nature to be able to grant necessary extensions, incompletes, or other accommodations for people who are ill.
It is likely that a man fitting my characteristics would have been listened to as a child, and would have come away with a diagnoses granting those accommodations before he was a teenager, and with those accommodations would have faced less difficulty, less barriers, and would likely achieved working life and more typical life trajectory much earlier than I will. In fact, it is likely (and I'm working out who to ask how to begin this study) that women in academia with invisible illnesses (especially those who are in the process of trying to find a diagnosis, probably fare much less well in academia than men because of this issue and intersection).
I mean let's consider my pre-diagnosis GPA's of (undergraduate) 3.01. That 3.01 has a good number of F's from before I was protected under the IDEA, and from instructors who refused to work with me because it "wouldn't be fair to the other students." No points for guessing which side of that one I'd rather be on. Because I would so much rather have been standing on the side of the healthy students feeling hard done by because another student got an extension they needed. So, also pre-protection under the IDEA first attempt at graduate school, my GPA was 2.58. And in fact, despite my 3.95 from my completion of a second degree in Psychology this last spring, until I am able to get the appeal in, I am saddled with my pre-protection GPA of 2.58 from 2012 as I start my new program.
However, post protection from IDEA, post diagnosis, post understanding of the social model of disability, and post learning self-advocacy and releasing shame that hindered my interactions with others when asking for the things that I needed, my GPA rose to 3.95 (as mentioned earlier). Now, if for even a second you are feeling like that is unfair and that I have unfair advantages that let me do that well, let me clear this up for you. This is NOT me having unfair advantages that let me perform better than I would under normal circumstances. This is giving me what I need to be able to perform up to and reveal my actual ability. That is not to say, that things that I have as a disabled student might not benefit others who aren't (like a somewhat reduced schedule, most would not need as much as I have, but our society has highly unhealthy expectations for people anyway and all could benefit from less hours working and more hours for rest and connection), and in fact I am a fan of Universal Design for that reason. But that is another blog post entirely and this one is already getting long.
This is why you should care, because people who have every potential and ability to succeed, to participate, and to contribute to our social, economic, political, and academic worlds are being shut out, not because they lack anything or because their bodies are different, but because our society is built to exclude them. At this point, our society is much better at including people with visible disabilities, but still has a great deal of fear that people whose disabilities are not visible are somehow trying to "game the system." There is much policing of our bodies, what access and accommodations we are given, and requirements for authorities to place specific diagnoses before we are allowed accommodations and things that we need to succeed. Even when, with the advent of genetics and other increases in understandings of the human bodies, new and previously unrecognized illnesses are being discovered and enumerated.
On a more positive note, my symptoms are very similar to my grandmother's, yet she never got a diagnosis for a large part of her symptoms affecting her daily life (though when she got older, she did get another one that did not cover those other symptoms). I have been lucky enough to. And even though it took literally decades, I now am covered under IDEA, and can work with my Professors to get my M.S.W and to be able to advocate for others so they don't have to go through this. I am lucky in that I had a family who has the means to support me through years of academia, through years of medical, and through years of trying to find jobs that worked with my illness. I am lucky, in this society, to have a chance at a normal professional and academic life even if it is this late in life.
I am lucky, but I also recognize that there are likely many other people with different intersectionalities, less family means to support their goals, and less access to medical treatment that fell by the wayside, that don't have the opportunities I do. And I am writing because of them. And so that people who come after me do not have to go through what I did. To open up a more inclusive society for everyone with disabilities. And I do mean everyone, whether their disabilities are visible, invisible, diagnosed, diagnosable, or still waiting to find out.
I am writing, and I know I am writing in a very uncomfortable spot. Because as a society we do know that people with disabilities should be given the access and the tools they need to be able to succeed. We are comfortable with that. But we are most comfortable, as previously mentioned, with people whose disabilities are more obvious (wheelchair users, people with vision difficulties and blindness for example).
I am writing where it is uncomfortable. Where my disability is not located in anything you can see or know. I am writing where I have to give up the shame I have been taught for years. I am writing in hopes that you can begin (if you are healthy and typically able-bodied) to examine those feelings of distrust, to examine the prejudice that people who "look fine" might just be lazy, crazy, too sensitive, or lacking in willpower. I am essentially, writing against the dominate culture, and asking you to examine the experiences of people left, metaphorically speaking, by the side of the road and yes, it is uncomfortable, for me as well as for you.
But I do it, because our voices deserve to be heard. Our experiences matter. We deserve inclusion and participation, and society deserves the benefit of our contributions!
He asked the first question, "How many of you are working?" Many, if not most hands went up. Mine did not because most of the jobs out there that I qualify for with the education that I have either require more physical labor than I can do, or more hours than I can do and stay within my limits while balancing my studies. So my hand stayed down and for a few minutes the shame of being my age and not "working" made it difficult to meet anybody's eyes for the next few minutes. Then he asked the second question. How many of you own homes. A few hands went up, mine did not. Because I am still single at this point, I will consider buying a home whether or not I'm coupled up in the future when my finances are more secure, but right now home-buying is simply out of the question.
So then he asked the next question,"How many of you are married?" Some hands went up. Mine obviously, did not. At this point my heart was falling to the floor, because I was beginning to put this list of questions together with articles we had read for policy class talking about measures of mobility and access that includes consideration of many of these sorts of questions.
For the first time, I really began to see outside of the difficulties, discrimination, and barriers I have faced academically and in the workforce (yes I have tried through the years!) and how much my disability either shuts me out of, or makes access much more difficult. Just consider your own thoughts as a healthy person (if you are) on dating someone who you know going in is ill, and will always to some degree be ill. Whose grandmother was ill, and who has other relatives also ill, and the questions people would ask, and the assumptions they would make. The assumptions that you would make, and whether you even would.
The last question, was who had a significant other at the time, and again, my hand stayed down. I've known for awhile that chronic illness can make dating life more difficult, and that though my finances will likely be okay in the end, that these four question really made me put together all of the areas of my life affected (academic, occupational, and social).
Another issue though that likely has impacted my course and history, is that I am a woman. Because the intersection of these identities--having an invisible disability, and being a woman--combines with an unfortunate cultural problem in the medical community right now. Women's symptoms are often overlooked, dismissed, or attributed to mental problems (this happened to me, first time I went in with pain was when was maybe eleven years old. First time they actually did some tests that had a chance of seeing what I had was when I was in my thirties). But this intersection with my identities (invisible disability and being a woman) also interacted with the academic environment which demands diagnoses of a definite nature to be able to grant necessary extensions, incompletes, or other accommodations for people who are ill.
It is likely that a man fitting my characteristics would have been listened to as a child, and would have come away with a diagnoses granting those accommodations before he was a teenager, and with those accommodations would have faced less difficulty, less barriers, and would likely achieved working life and more typical life trajectory much earlier than I will. In fact, it is likely (and I'm working out who to ask how to begin this study) that women in academia with invisible illnesses (especially those who are in the process of trying to find a diagnosis, probably fare much less well in academia than men because of this issue and intersection).
I mean let's consider my pre-diagnosis GPA's of (undergraduate) 3.01. That 3.01 has a good number of F's from before I was protected under the IDEA, and from instructors who refused to work with me because it "wouldn't be fair to the other students." No points for guessing which side of that one I'd rather be on. Because I would so much rather have been standing on the side of the healthy students feeling hard done by because another student got an extension they needed. So, also pre-protection under the IDEA first attempt at graduate school, my GPA was 2.58. And in fact, despite my 3.95 from my completion of a second degree in Psychology this last spring, until I am able to get the appeal in, I am saddled with my pre-protection GPA of 2.58 from 2012 as I start my new program.
However, post protection from IDEA, post diagnosis, post understanding of the social model of disability, and post learning self-advocacy and releasing shame that hindered my interactions with others when asking for the things that I needed, my GPA rose to 3.95 (as mentioned earlier). Now, if for even a second you are feeling like that is unfair and that I have unfair advantages that let me do that well, let me clear this up for you. This is NOT me having unfair advantages that let me perform better than I would under normal circumstances. This is giving me what I need to be able to perform up to and reveal my actual ability. That is not to say, that things that I have as a disabled student might not benefit others who aren't (like a somewhat reduced schedule, most would not need as much as I have, but our society has highly unhealthy expectations for people anyway and all could benefit from less hours working and more hours for rest and connection), and in fact I am a fan of Universal Design for that reason. But that is another blog post entirely and this one is already getting long.
This is why you should care, because people who have every potential and ability to succeed, to participate, and to contribute to our social, economic, political, and academic worlds are being shut out, not because they lack anything or because their bodies are different, but because our society is built to exclude them. At this point, our society is much better at including people with visible disabilities, but still has a great deal of fear that people whose disabilities are not visible are somehow trying to "game the system." There is much policing of our bodies, what access and accommodations we are given, and requirements for authorities to place specific diagnoses before we are allowed accommodations and things that we need to succeed. Even when, with the advent of genetics and other increases in understandings of the human bodies, new and previously unrecognized illnesses are being discovered and enumerated.
On a more positive note, my symptoms are very similar to my grandmother's, yet she never got a diagnosis for a large part of her symptoms affecting her daily life (though when she got older, she did get another one that did not cover those other symptoms). I have been lucky enough to. And even though it took literally decades, I now am covered under IDEA, and can work with my Professors to get my M.S.W and to be able to advocate for others so they don't have to go through this. I am lucky in that I had a family who has the means to support me through years of academia, through years of medical, and through years of trying to find jobs that worked with my illness. I am lucky, in this society, to have a chance at a normal professional and academic life even if it is this late in life.
I am lucky, but I also recognize that there are likely many other people with different intersectionalities, less family means to support their goals, and less access to medical treatment that fell by the wayside, that don't have the opportunities I do. And I am writing because of them. And so that people who come after me do not have to go through what I did. To open up a more inclusive society for everyone with disabilities. And I do mean everyone, whether their disabilities are visible, invisible, diagnosed, diagnosable, or still waiting to find out.
I am writing, and I know I am writing in a very uncomfortable spot. Because as a society we do know that people with disabilities should be given the access and the tools they need to be able to succeed. We are comfortable with that. But we are most comfortable, as previously mentioned, with people whose disabilities are more obvious (wheelchair users, people with vision difficulties and blindness for example).
I am writing where it is uncomfortable. Where my disability is not located in anything you can see or know. I am writing where I have to give up the shame I have been taught for years. I am writing in hopes that you can begin (if you are healthy and typically able-bodied) to examine those feelings of distrust, to examine the prejudice that people who "look fine" might just be lazy, crazy, too sensitive, or lacking in willpower. I am essentially, writing against the dominate culture, and asking you to examine the experiences of people left, metaphorically speaking, by the side of the road and yes, it is uncomfortable, for me as well as for you.
But I do it, because our voices deserve to be heard. Our experiences matter. We deserve inclusion and participation, and society deserves the benefit of our contributions!
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