Restricted: On the Body, Self-care, Dependence, and Ableism
The other night a friend of mine was looking for statistics on eating disorders and disabled people. I quickly responded to the request, thinking that I had statistics; however, I quickly realized that while I had a few articles discussing the subject, none of them had statistics.
As I checked back on the Facebook thread, I realized just how common fluid restriction, disordered eating habits, and straight up eating disorders were among people who need help to take care of their basic needs, and I also realized nobody ever seemed to talk about it. I realized that to most people this experience doesn’t exist. It isn’t recognized. It isn’t talked about. There are almost no statistics, but I promise you, it’s real.
I am one of those people. I have restricted fluid for as long as I can remember, for a variety of reasons. When I was younger I wouldn’t drink at school. If I knew my aid was going to be absent because I didn’t trust an untrained substitute to take me to the bathroom.
When I go out, I will often times restrict fluids for a variety of reasons, usually because I’m not sure if the bathroom is going to be accessible, but also because I don’t want to ask my friends for help. I know what it feels like to always worry about inconveniencing other people, and therefore putting your needs of the background. I hate having to ask for help,
I hate people’s reactions, I hate the feeling that I need them more than they need me. I know that’s not true, intrinsically, but my whole life I’ve learned that. I grew up viewing my body and my needs as a problem.
I have had a complex relationship with food and my body for a long time. I have been told in many different ways that I need to be thin in order to make it easier for other people to take care of me. I not thin, I haven’t been since I was a little girl, and I may never be, and that should be okay, but it’s not.
I understand that there are so many factors in play when it comes to fat-shaming and fatphobia, but when you throw ableism into the mix it gets even more complicated. When comments are made about my weight, it’s never just about my appearance, or even about my “health” or “fitness”, it’s about my survival, and that’s terrifying.
So many times in my life I have been told I have to do things, or not do things to make things easier for other people, with little regard for what that means for me. I restrict fluids so that other people won’t have to take me to the bathroom.
Five years ago, before I started my freshman year in college I went to a physical therapist to work on transfers when we were done she said to me offhandedly, “you better not gain the freshman 15, because then no one will be able to take care of you.”
I lost over 15 pounds that semester.
When I started to really struggle with my relationship with food, a friend convinced me to see a therapist. The first therapist I saw told me it was fine because I was “not too thin” and he could “see how somebody in my situation would feel the need to engage in this behavior, so as long as I was careful about it would be fine.”
I was stunned.
Here I was trying to address a problem, and I was being told by a professional that it wasn’t a problem because of who I was. The ableism and sizeism was ridiculous. I can’t imagine anybody telling an able-bodied person that it is okay not to eat or drink, or even saying that they understand why they do it, but people tell me that all the time, and sometimes even encourage the behavior.
The problem is that for people who need help with care, everything is framed in the context of what other people need, and what makes things easier for other people without consideration for the person themselves.
The problem is that oftentimes I feel more like an object than a person.
The problem is that people who are helping me think that they can make offhanded comments about my weight or about how difficult it is to help me in the bathroom and that it doesn’t matter.
The problem is that I have been taught my whole life to think of other people first and not to worry about myself.
The problem is that we frame disability in terms of burden, and we tell people that they have to do everything they can not to be a problem for other people.
The problem is we don’t think it’s a problem, but it is. It’s real and it’s dangerous.
When the pressure for thinness goes beyond the idea of fitting into a ridiculous and unhealthy social norm and enters the world of whether or not somebody will take care of you, it is terrifying, but it is no less problematic.
It is no less problematic to pressure disabled people to meet some ridiculous ideal than it is pressure able-bodied people to do the same. We need to reframe the conversation, and instead of teaching disabled people to be afraid of being a burden, we need to teach them to always practice self-care.
Instead of teaching disabled people that they need other people more than other people need them, we need to talk about interdependence, and how nobody really ever does things on their own
Instead of raising disabled children to feel like they need to get out of the way, take up less space, and do anything to make life easier for others, we need to teach disabled children, from day one, that they are just as important as everybody else, and they should never sacrifice their needs for somebody else’s convenience.
We need to teach caregivers to remember that disabled people have feelings too, and what you say and do matters. We need to stop believing the lie that just because you are providing assistance to somebody your needs are more important than theirs.
We need to teach society to stop looking at what disabled people can do to make other people’s lives easier and start looking at structures, constructs, and the ableism that we have ingrained in our culture.
We need to stop pretending that these issues are a natural outcome of, or response to disability, and realize that it is so much more complicated than that.
We need to stop behaving, speaking, and thinking in ways that encourage disabled people to neglect their own needs in order to be treated more favorably.
Most importantly, we need to talk about it. We need to acknowledge it, instead of pretending it doesn’t exist.
We need to stop explicitly and tacitly saying that it is okay for disabled people to hurt themselves in order to make other people’s lives easier.
We need to have these conversations and stop pretending it isn’t a big deal. We need to realize that body acceptance is so much more than being comfortable with what you see in the mirror, and we need to stop expecting disabled people to apologize for their existence, and for their needs.
I’m finally starting to learn not to apologize for mine.
As I checked back on the Facebook thread, I realized just how common fluid restriction, disordered eating habits, and straight up eating disorders were among people who need help to take care of their basic needs, and I also realized nobody ever seemed to talk about it. I realized that to most people this experience doesn’t exist. It isn’t recognized. It isn’t talked about. There are almost no statistics, but I promise you, it’s real.
I am one of those people. I have restricted fluid for as long as I can remember, for a variety of reasons. When I was younger I wouldn’t drink at school. If I knew my aid was going to be absent because I didn’t trust an untrained substitute to take me to the bathroom.
When I go out, I will often times restrict fluids for a variety of reasons, usually because I’m not sure if the bathroom is going to be accessible, but also because I don’t want to ask my friends for help. I know what it feels like to always worry about inconveniencing other people, and therefore putting your needs of the background. I hate having to ask for help,
I hate people’s reactions, I hate the feeling that I need them more than they need me. I know that’s not true, intrinsically, but my whole life I’ve learned that. I grew up viewing my body and my needs as a problem.
I have had a complex relationship with food and my body for a long time. I have been told in many different ways that I need to be thin in order to make it easier for other people to take care of me. I not thin, I haven’t been since I was a little girl, and I may never be, and that should be okay, but it’s not.
I understand that there are so many factors in play when it comes to fat-shaming and fatphobia, but when you throw ableism into the mix it gets even more complicated. When comments are made about my weight, it’s never just about my appearance, or even about my “health” or “fitness”, it’s about my survival, and that’s terrifying.
So many times in my life I have been told I have to do things, or not do things to make things easier for other people, with little regard for what that means for me. I restrict fluids so that other people won’t have to take me to the bathroom.
Five years ago, before I started my freshman year in college I went to a physical therapist to work on transfers when we were done she said to me offhandedly, “you better not gain the freshman 15, because then no one will be able to take care of you.”
I lost over 15 pounds that semester.
When I started to really struggle with my relationship with food, a friend convinced me to see a therapist. The first therapist I saw told me it was fine because I was “not too thin” and he could “see how somebody in my situation would feel the need to engage in this behavior, so as long as I was careful about it would be fine.”
I was stunned.
Here I was trying to address a problem, and I was being told by a professional that it wasn’t a problem because of who I was. The ableism and sizeism was ridiculous. I can’t imagine anybody telling an able-bodied person that it is okay not to eat or drink, or even saying that they understand why they do it, but people tell me that all the time, and sometimes even encourage the behavior.
The problem is that for people who need help with care, everything is framed in the context of what other people need, and what makes things easier for other people without consideration for the person themselves.
The problem is that oftentimes I feel more like an object than a person.
The problem is that people who are helping me think that they can make offhanded comments about my weight or about how difficult it is to help me in the bathroom and that it doesn’t matter.
The problem is that I have been taught my whole life to think of other people first and not to worry about myself.
The problem is that we frame disability in terms of burden, and we tell people that they have to do everything they can not to be a problem for other people.
The problem is we don’t think it’s a problem, but it is. It’s real and it’s dangerous.
When the pressure for thinness goes beyond the idea of fitting into a ridiculous and unhealthy social norm and enters the world of whether or not somebody will take care of you, it is terrifying, but it is no less problematic.
It is no less problematic to pressure disabled people to meet some ridiculous ideal than it is pressure able-bodied people to do the same. We need to reframe the conversation, and instead of teaching disabled people to be afraid of being a burden, we need to teach them to always practice self-care.
Instead of teaching disabled people that they need other people more than other people need them, we need to talk about interdependence, and how nobody really ever does things on their own
Instead of raising disabled children to feel like they need to get out of the way, take up less space, and do anything to make life easier for others, we need to teach disabled children, from day one, that they are just as important as everybody else, and they should never sacrifice their needs for somebody else’s convenience.
We need to teach caregivers to remember that disabled people have feelings too, and what you say and do matters. We need to stop believing the lie that just because you are providing assistance to somebody your needs are more important than theirs.
We need to teach society to stop looking at what disabled people can do to make other people’s lives easier and start looking at structures, constructs, and the ableism that we have ingrained in our culture.
We need to stop pretending that these issues are a natural outcome of, or response to disability, and realize that it is so much more complicated than that.
We need to stop behaving, speaking, and thinking in ways that encourage disabled people to neglect their own needs in order to be treated more favorably.
Most importantly, we need to talk about it. We need to acknowledge it, instead of pretending it doesn’t exist.
We need to stop explicitly and tacitly saying that it is okay for disabled people to hurt themselves in order to make other people’s lives easier.
We need to have these conversations and stop pretending it isn’t a big deal. We need to realize that body acceptance is so much more than being comfortable with what you see in the mirror, and we need to stop expecting disabled people to apologize for their existence, and for their needs.
I’m finally starting to learn not to apologize for mine.
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