On Ableism
ableism, according to the Merriam Webster dictionary, is defined as discrimination or prejudice against people with disabilities.
A disability, also according to the Merriam Webster dictionary, is defined as a condition that damages or limits a person's physical or mental abilities.
I don't typically identify myself as a person with a disability. part of that comes from I don't like the word disability, and part of that is because my condition doesn't have as visible side effects, like the kind one would get with being in a wheel chair or having a condition such as Down Syndrome. But according to this definition I am a person's with a disability. My life altering medical condition, the way my genes were made, means I can't go through life the same way an able bodied person can and does.
Ableism is one of those types of discrimination that nobody talks about. People know about racism and sexism. But not many people know what ableism is or how it affects the lives of people living with disabilities and everyone really. I've heard that because the discrimination against people with disabilities isn't always violent that is doesn't really exist. I've heard that conditions for people with disabilities have improved greatly from what they once were and that we should just be grateful.
But, just as an example, think about our education system. Those who don't learn 'typically' or have the same abilities as their classmates are given a special program. Instead of the entire system learning how to adapt to these people, they are singled out. (Don't get me wrong, I know the importance of special education programs. I'm not trying to start an argument here, just using this as an example.) The entire system, the way the world functions, is prejudice against people with any form of disability. It starts with people with disabilities not being accurately portrayed in the media. There are huge stereotypes around what a person with a disability should be like or act like or what their abilities are.
I listened to the liturgists podcast today on ableism (HIGHLY recommend everyone to go and listen to this podcast) and as I was listening I wept. Because the stories they were telling, the people they were interviewing were telling the stories of my life. All of these things that have happened to me that I never had a way to describe. The prejudices against people with disabilities were something I just kind of accepted as part of living life with a body that didn't function "Normally". But that's not the way it should be, and something needs to change.
I want to share some of my experiences with you, in hopes that we can open up the conversation and begin talking about the stories of people with disabilities and the prejudices formed against them.
In the podcast, a mom who has a child with Down Syndrome was talking about how when her daughter was a baby she was hooked up to oxygen so she was unable to do with her some of the things she saw other parents doing with their healthy babies, such as throw her in the air or push her on a swing. I have this picture in my baby book where I was fairly young and my parents had taken my swimming. My dad had to hold me close to the edge of the pool because I had my feeding pump. During those first few years of my life, my parents would have had to navigate me and my feeding pole and all of my equipment around if they wanted to go anywhere. I remember talking to my mom about that picture and she said that they did what they had to do to give me a normal life. But now it makes me think of how unequipped society is to accommodate people who have any sort of difference. Before I started school I didn't know that there was really anything wrong with me but as I got older I began to see all the ways I was different. And there was this thing that was portrayed that different somehow meant bad. I wasn't normal. there was something wrong with me.
More so when I was younger but even still now I get well meaning people who want to pray for my complete healing. When I was younger the idea sounded nice, even if it sounded completely foreign. If I just had enough faith maybe God would heal me and make me normal. But I was operating under this idea that the world had handed me that there was something wrong with me that needed to be healed. I don't want people to pray for God's complete healing in my life because there is nothing wrong with me. My genes came together differently than the majority of other people's. I have a genetic condition. But that's who I am. Trying to take that away would change who I am. I've heard that I need to allow God's power to work through me and that my illness is something to be overcome and that God is a God who heals and that He can take away this illness that is in my body and by saying these things it is revealing an issue with this reflection of the Divine. Who I am, the way my genes came together, is a reflection of Divine Love.
Just yesterday I was having a conversation with someone who said "I can't imagine how you live your life like that." And I know the person was well meaning in their comment but I don't see any other way of seeing the world. This is what I've known for 20 years. I've learned how to do things, to take care of myself. You can't imagine it any more than I can imagine what it would be like to be able to eat normally. I know other people have faced this more than I have but there is this conception that people with disabilities can't do things or that they should be praised for doing even the simplest of tasks. But I think it was Emily Rapp who talked about still having to get out of bed every morning, just like you.
I also get comments like "I don't even see you as being sick" which I think does just as much of a disservice. Because being sick is a huge part of who I am. It's how I see the world. I don't know how to see the world without seeing it through the lens of Glycogen Storage Disease. So when you say that you don't see the illness, you're in a sense saying that you don't see me.
There are stares I get, still, when I have to do a tube feed in public. Now I try to find a private place (Even if most of the time that's just a dirty public bathroom stall) because I'm tired of people staring.
I end up taking my life saving treatment in a bathroom stall to make other people more comfortable (I know there are lots of issues with that statement, and some of the fault is mine but bear with me.) My body, who I am, the way I am, is revolting to some people. And I get that some people are just curious, but I think that also comes back to people with disabilities not being represented.
I used to stare at pictures of other women, just searching for a woman with a feeding tube who was beautiful. because people like me are not given representation. the people I had to look up to were tall and thin and had perfect bodies without scars. Even now, with diversity being shown throughout the media, I don't see images of people with feeding tubes, with other sorts of outward signs of illness and disability. That's part of the reason I think its so important to share photos of my stomach on my instagram and facebook. I want some other child with a feeding tube to be able to look at me and feel represented in some way. Its not because I love my body, or my scars or my feeding tube. but its because I know how important representation is.
Just the other week I was buying things at a store and the cashier started asking me about my health because she noticed I had some effects of a disability. I was in the store, buying books totally unrelated to anything illness or health.
I remember reading a comment on someone's blog a while ago that they had written about me where the commenter said "How horrifying" when referring to me and my condition. That statement always stuck with me, and still does even 8 or so years later.
I know I'm maybe not as qualified to speak on this as some people, as most of the physical side effects of my illness can now be hidden. But I want to share my story, the ignorance and under representation and prejudice I encounter on a daily basis, to hopefully start the conversation. Start getting informed, start listening to people's stories who deal with any kind of prejudice and discrimination as part of their daily lives.
I never expected to find myself in this position of advocate but I've seen and experienced so much that I can no longer be silent about the things that matter.
I'm always open for respectful conversation if you have any questions about discrimination, want to get involved or just want to know more about my experience and what I go through on a daily basis.
A disability, also according to the Merriam Webster dictionary, is defined as a condition that damages or limits a person's physical or mental abilities.
I don't typically identify myself as a person with a disability. part of that comes from I don't like the word disability, and part of that is because my condition doesn't have as visible side effects, like the kind one would get with being in a wheel chair or having a condition such as Down Syndrome. But according to this definition I am a person's with a disability. My life altering medical condition, the way my genes were made, means I can't go through life the same way an able bodied person can and does.
Ableism is one of those types of discrimination that nobody talks about. People know about racism and sexism. But not many people know what ableism is or how it affects the lives of people living with disabilities and everyone really. I've heard that because the discrimination against people with disabilities isn't always violent that is doesn't really exist. I've heard that conditions for people with disabilities have improved greatly from what they once were and that we should just be grateful.
But, just as an example, think about our education system. Those who don't learn 'typically' or have the same abilities as their classmates are given a special program. Instead of the entire system learning how to adapt to these people, they are singled out. (Don't get me wrong, I know the importance of special education programs. I'm not trying to start an argument here, just using this as an example.) The entire system, the way the world functions, is prejudice against people with any form of disability. It starts with people with disabilities not being accurately portrayed in the media. There are huge stereotypes around what a person with a disability should be like or act like or what their abilities are.
I listened to the liturgists podcast today on ableism (HIGHLY recommend everyone to go and listen to this podcast) and as I was listening I wept. Because the stories they were telling, the people they were interviewing were telling the stories of my life. All of these things that have happened to me that I never had a way to describe. The prejudices against people with disabilities were something I just kind of accepted as part of living life with a body that didn't function "Normally". But that's not the way it should be, and something needs to change.
I want to share some of my experiences with you, in hopes that we can open up the conversation and begin talking about the stories of people with disabilities and the prejudices formed against them.
In the podcast, a mom who has a child with Down Syndrome was talking about how when her daughter was a baby she was hooked up to oxygen so she was unable to do with her some of the things she saw other parents doing with their healthy babies, such as throw her in the air or push her on a swing. I have this picture in my baby book where I was fairly young and my parents had taken my swimming. My dad had to hold me close to the edge of the pool because I had my feeding pump. During those first few years of my life, my parents would have had to navigate me and my feeding pole and all of my equipment around if they wanted to go anywhere. I remember talking to my mom about that picture and she said that they did what they had to do to give me a normal life. But now it makes me think of how unequipped society is to accommodate people who have any sort of difference. Before I started school I didn't know that there was really anything wrong with me but as I got older I began to see all the ways I was different. And there was this thing that was portrayed that different somehow meant bad. I wasn't normal. there was something wrong with me.
More so when I was younger but even still now I get well meaning people who want to pray for my complete healing. When I was younger the idea sounded nice, even if it sounded completely foreign. If I just had enough faith maybe God would heal me and make me normal. But I was operating under this idea that the world had handed me that there was something wrong with me that needed to be healed. I don't want people to pray for God's complete healing in my life because there is nothing wrong with me. My genes came together differently than the majority of other people's. I have a genetic condition. But that's who I am. Trying to take that away would change who I am. I've heard that I need to allow God's power to work through me and that my illness is something to be overcome and that God is a God who heals and that He can take away this illness that is in my body and by saying these things it is revealing an issue with this reflection of the Divine. Who I am, the way my genes came together, is a reflection of Divine Love.
Just yesterday I was having a conversation with someone who said "I can't imagine how you live your life like that." And I know the person was well meaning in their comment but I don't see any other way of seeing the world. This is what I've known for 20 years. I've learned how to do things, to take care of myself. You can't imagine it any more than I can imagine what it would be like to be able to eat normally. I know other people have faced this more than I have but there is this conception that people with disabilities can't do things or that they should be praised for doing even the simplest of tasks. But I think it was Emily Rapp who talked about still having to get out of bed every morning, just like you.
I also get comments like "I don't even see you as being sick" which I think does just as much of a disservice. Because being sick is a huge part of who I am. It's how I see the world. I don't know how to see the world without seeing it through the lens of Glycogen Storage Disease. So when you say that you don't see the illness, you're in a sense saying that you don't see me.
There are stares I get, still, when I have to do a tube feed in public. Now I try to find a private place (Even if most of the time that's just a dirty public bathroom stall) because I'm tired of people staring.
I end up taking my life saving treatment in a bathroom stall to make other people more comfortable (I know there are lots of issues with that statement, and some of the fault is mine but bear with me.) My body, who I am, the way I am, is revolting to some people. And I get that some people are just curious, but I think that also comes back to people with disabilities not being represented.
I used to stare at pictures of other women, just searching for a woman with a feeding tube who was beautiful. because people like me are not given representation. the people I had to look up to were tall and thin and had perfect bodies without scars. Even now, with diversity being shown throughout the media, I don't see images of people with feeding tubes, with other sorts of outward signs of illness and disability. That's part of the reason I think its so important to share photos of my stomach on my instagram and facebook. I want some other child with a feeding tube to be able to look at me and feel represented in some way. Its not because I love my body, or my scars or my feeding tube. but its because I know how important representation is.
Just the other week I was buying things at a store and the cashier started asking me about my health because she noticed I had some effects of a disability. I was in the store, buying books totally unrelated to anything illness or health.
I remember reading a comment on someone's blog a while ago that they had written about me where the commenter said "How horrifying" when referring to me and my condition. That statement always stuck with me, and still does even 8 or so years later.
I know I'm maybe not as qualified to speak on this as some people, as most of the physical side effects of my illness can now be hidden. But I want to share my story, the ignorance and under representation and prejudice I encounter on a daily basis, to hopefully start the conversation. Start getting informed, start listening to people's stories who deal with any kind of prejudice and discrimination as part of their daily lives.
I never expected to find myself in this position of advocate but I've seen and experienced so much that I can no longer be silent about the things that matter.
I'm always open for respectful conversation if you have any questions about discrimination, want to get involved or just want to know more about my experience and what I go through on a daily basis.
Thank you for sharing your story. Have you heard of the Disability Visibility Project? They have a Facebook page where people share disability stories from a first person point of view. You may find peers who understand where you're coming from. I am one of the moderators. If you'd like me to share this post there, please let me know.
ReplyDelete