Meet Haben Girma
April 18, 2016 11:40 AM Subscribe
"Disability is not something one overcomes. Stories that claim successful people with disabilities overcame their disabilities mislead the public. The barriers exist not in the person, but in the physical, social, and digital environment. People with disabilities and their communities succeed when the community decides to dismantle digital, attitudinal, and physical barriers. My success at school, in the office, and even on the dance floor were facilitated by communities that chose to practice inclusion."
This Harvard-trained attorney and Bay Area resident has thoughts about the harmful messages journalists (and others) should avoid when writing about people with disabilities. And she warns about the "Information famine," which "refers to the economic and social barriers currently facing people with disabilities in our digital world."
This Harvard-trained attorney and Bay Area resident has thoughts about the harmful messages journalists (and others) should avoid when writing about people with disabilities. And she warns about the "Information famine," which "refers to the economic and social barriers currently facing people with disabilities in our digital world."
I'd never heard of "information famine" before, which I thought was an interesting topic. As someone managing a couple of chronic conditions, I'm not under any illusion that all my problems are external ones. That said, I do like her take on inclusion because I do think that lots of environments, such as Internet-based companies as well as physical ones, tend to exclude people with certain disabilities by default. Which is thoughtless and unnecessary. So maybe I'm more optimistic than I should be but I enjoyed finding out about this person.
posted by Bella Donna at 3:01 PM on April 18, 2016
posted by Bella Donna at 3:01 PM on April 18, 2016
Most of the disability activists I follow seem to feel that while aspects of their conditions may be uncomfortable, inconvenient, limiting, etc., it's how society responds that is or isn't disabling.
Also, people whose experience with disability is second-hand would do well to listen more and opine less. You may not be able to wrap your head around the idea that somebody with cerebral palsy, for example, wouldn't choose to be cured because in their experience the biggest problems are with other people rather than with the effects of the CP, but I know of at least one blogger for whom that's the case.
It's better to avoid talking about people if you can listen to them.
posted by Lexica at 3:14 PM on April 18, 2016 [6 favorites]
Also, people whose experience with disability is second-hand would do well to listen more and opine less. You may not be able to wrap your head around the idea that somebody with cerebral palsy, for example, wouldn't choose to be cured because in their experience the biggest problems are with other people rather than with the effects of the CP, but I know of at least one blogger for whom that's the case.
It's better to avoid talking about people if you can listen to them.
posted by Lexica at 3:14 PM on April 18, 2016 [6 favorites]
There's often a sharp difference between the theory of social disability and what anyone actually practices. I've said it before on the Blue and elsewhere, but eyeglasses are a perfect example of an individualized solution to an environment dependent disability, and yet I've never seen anyone seriously suggest that the real solution is just to provide larger print books.
Re: disability activists, of course they believe that. They wouldn't be doing what they are if they didn't. But their beliefs on reflect their own opinions-- they don't necessarily reflect those of people on the ground. I have an ASD, yet the number of ASD activists I have seem who speak for me is exactly zero. It's easy to tell others to listen when you can be sure that yours is the voice they will default to listening to.
posted by steady-state strawberry at 3:20 PM on April 18, 2016 [4 favorites]
Re: disability activists, of course they believe that. They wouldn't be doing what they are if they didn't. But their beliefs on reflect their own opinions-- they don't necessarily reflect those of people on the ground. I have an ASD, yet the number of ASD activists I have seem who speak for me is exactly zero. It's easy to tell others to listen when you can be sure that yours is the voice they will default to listening to.
posted by steady-state strawberry at 3:20 PM on April 18, 2016 [4 favorites]
The only kind of story most people want to hear about disability is one with redemption and triumph, a hero's journey, but that is rarely how it works out. What is harder is confronting the messy reality where we learn how we're not helping by projecting false narratives on people who have specific needs which aren't being met.
posted by krinklyfig at 3:24 PM on April 18, 2016 [2 favorites]
posted by krinklyfig at 3:24 PM on April 18, 2016 [2 favorites]
Lexica:Also, people whose experience with disability is second-hand would do well to listen more and opine less.
Remarkably, I do in fact listen; that's why I hear my friends ranting about the shittiness of the social disability model when applied to their personal issues. It may very well work for you, but it's presented as a universal model. And has some very very ugly implications when people who *aren't* in fact happy, *would* like to be cured and not just accommodated, are told that makes them wrong.
posted by tavella at 3:37 PM on April 18, 2016 [6 favorites]
Remarkably, I do in fact listen; that's why I hear my friends ranting about the shittiness of the social disability model when applied to their personal issues. It may very well work for you, but it's presented as a universal model. And has some very very ugly implications when people who *aren't* in fact happy, *would* like to be cured and not just accommodated, are told that makes them wrong.
posted by tavella at 3:37 PM on April 18, 2016 [6 favorites]
yet I've never seen anyone seriously suggest that the real solution is just to provide larger print books
wait...what is the large print section of the bookstore for then?
posted by mittens at 5:23 PM on April 18, 2016
wait...what is the large print section of the bookstore for then?
posted by mittens at 5:23 PM on April 18, 2016
... as opposed to wearing glasses and then getting larger print books if they are absolutely necessary. The vast majority of whose readers would love to go back to normal vision.
posted by steady-state strawberry at 6:03 PM on April 18, 2016 [1 favorite]
posted by steady-state strawberry at 6:03 PM on April 18, 2016 [1 favorite]
tavella: Ugh. I've really gotten cynical about the social model of disability, or at least when taken to the extreme of trying to pretend that *everything* is external, that "the barriers exist not in the person". I have friends with chronic depression or chronic pain that are so seriously bitter about it. Sure, it's great if society accommodates them with sick days and the like, but that doesn't actually fix everything that is miserable about those conditions and they'd much prefer a cure. It becomes a way of blaming the person -- if you aren't happy with your disability, then you are self-hating. And god forbid you think that the issue should be fixed! How dare you think you are broken!
This is a fair point, in so far as people who would like and want to be fixed. And their viewpoints are critical. Psychiatric survivors will tell you this. But they want their own input into the process. ECT, lobotomy, etc. We can go on.
I interviewed a blind guy over the dinner table tonight who happens to be my husband. And he's somebody who knows more about the history of accessibility and disability rights than I ever can. He'll tell you that he doesn't want his sight back. There are a number of reasons for this. Oliver Sacks might tell you this would be a shattering rush of sensory input.
The social model of disability is a critical piece of living, not just for people with disabilities right now, but for those of us (myself included) who are only temporarily able-bodied. This does not shut down the notion of medical research.
If we view accessibility and universal design as THE default, everyone is in a good place.
So, before threadshitting on this, maybe think about the point that Haben Girma was actually making here:
-Non-disabled people should feel grateful they don’t have disabilities. This perpetuates hierarchies of us versus them, continuing the marginalization of people with disabilities.
-Successful people with disabilities overcame their disabilities. When the media portrays the problem as the disability, society is not encouraged to change. The biggest barriers exist not in the person, but in the physical, social, and digital environment. People with disabilities and their communities succeed when the community decides to dismantle digital, attitudinal, and physical barriers.
-Flat, one-dimensional portrayals of people with disabilities. Stories that reduce a person to just a disabled person encourages potential employers, teachers, and other community members to similarly reduce the person to just a disability. We are all diverse and participate in multiple communities, and flat stories actually make it harder to participate in many communities.
Again: "The biggest barriers"
Got it?
posted by mandolin conspiracy at 6:08 PM on April 18, 2016 [4 favorites]
This is a fair point, in so far as people who would like and want to be fixed. And their viewpoints are critical. Psychiatric survivors will tell you this. But they want their own input into the process. ECT, lobotomy, etc. We can go on.
I interviewed a blind guy over the dinner table tonight who happens to be my husband. And he's somebody who knows more about the history of accessibility and disability rights than I ever can. He'll tell you that he doesn't want his sight back. There are a number of reasons for this. Oliver Sacks might tell you this would be a shattering rush of sensory input.
The social model of disability is a critical piece of living, not just for people with disabilities right now, but for those of us (myself included) who are only temporarily able-bodied. This does not shut down the notion of medical research.
If we view accessibility and universal design as THE default, everyone is in a good place.
So, before threadshitting on this, maybe think about the point that Haben Girma was actually making here:
-Non-disabled people should feel grateful they don’t have disabilities. This perpetuates hierarchies of us versus them, continuing the marginalization of people with disabilities.
-Successful people with disabilities overcame their disabilities. When the media portrays the problem as the disability, society is not encouraged to change. The biggest barriers exist not in the person, but in the physical, social, and digital environment. People with disabilities and their communities succeed when the community decides to dismantle digital, attitudinal, and physical barriers.
-Flat, one-dimensional portrayals of people with disabilities. Stories that reduce a person to just a disabled person encourages potential employers, teachers, and other community members to similarly reduce the person to just a disability. We are all diverse and participate in multiple communities, and flat stories actually make it harder to participate in many communities.
Again: "The biggest barriers"
Got it?
posted by mandolin conspiracy at 6:08 PM on April 18, 2016 [4 favorites]
The only kind of story most people want to hear about disability is one with redemption and triumph, a hero's journey, but that is rarely how it works out. What is harder is confronting the messy reality where we learn how we're not helping by projecting false narratives on people who have specific needs which aren't being met.
Bingo.
Haben Girma:
Try this experiment: write your story without using the word inspiration. A word originally intended to describe fresh excitement for new ideas, inspiration is sadly often used in a way that increases marginalization. Knowing this danger can help facilitate thoughtful portrayals of people with disabilities. While we can’t control how people feel, we can control the messages we send.
Again: Stella Young: Lead a rich and messy life.
posted by mandolin conspiracy at 6:13 PM on April 18, 2016 [2 favorites]
Bingo.
Haben Girma:
Try this experiment: write your story without using the word inspiration. A word originally intended to describe fresh excitement for new ideas, inspiration is sadly often used in a way that increases marginalization. Knowing this danger can help facilitate thoughtful portrayals of people with disabilities. While we can’t control how people feel, we can control the messages we send.
Again: Stella Young: Lead a rich and messy life.
posted by mandolin conspiracy at 6:13 PM on April 18, 2016 [2 favorites]
Mod note: One comment deleted. This is a tough issue and people have different positions. Let's maybe step away from having this thread be just a fight about a binary of totally accepting vs totally dismissing her view, and toward talking about for example what's good or interesting in this article, what do people find compelling/new/well-explained/useful in her view, etc?
posted by LobsterMitten (staff) at 6:34 PM on April 18, 2016
posted by LobsterMitten (staff) at 6:34 PM on April 18, 2016
Re: disability activists, of course they believe that. They wouldn't be doing what they are if they didn't. But their beliefs on reflect their own opinions-- they don't necessarily reflect those of people on the ground. I have an ASD, yet the number of ASD activists I have seem who speak for me is exactly zero. It's easy to tell others to listen when you can be sure that yours is the voice they will default to listening to.
Mmm. Some of them, including the one I live with, have made sure that play equipment designed for kids with ASD gets installed in the parks in the municipality he works for.
So, you know, some of them are getting things done down on the ground.
We’re all interdependent and go further when we support each other.
posted by mandolin conspiracy at 6:48 PM on April 18, 2016 [1 favorite]
Mmm. Some of them, including the one I live with, have made sure that play equipment designed for kids with ASD gets installed in the parks in the municipality he works for.
So, you know, some of them are getting things done down on the ground.
We’re all interdependent and go further when we support each other.
posted by mandolin conspiracy at 6:48 PM on April 18, 2016 [1 favorite]
Hey I know Haben. She's great! Taking to her on her keyboard to Braille converter thing is quite an experience.
posted by cman at 6:53 PM on April 18, 2016
posted by cman at 6:53 PM on April 18, 2016
So, you know, some of them are getting things done down on the ground.
Things done on the ground that have nothing to do with my lived experiences or needs.
If your public library got a Braille section based upon the pleas of a group that portrayed blind people as helpless individuals who ought to be pitied, I'm sure your husband would be upset. I feel the same way. Getting playground equipment installed that's 'designed for children with ASD' is so far behind my concerns about the narratives around ASD and about how those things are dictated by white men that it's not even worth mentioning in the same volume.
There are millions of individuals with disabilities out there. Many of them haven't been diagnosed. Many, many more of those who have are people who would rather not have their disability. My father would rather not have arthritis -- not because his job isn't able to handle a wheelchair, but because it's painful and it means he can't do the things (furniture refinishing, gardening) he'd like to do without having to relearn how to do them all over again. The members of my family who have depression would rather not be depressed -- not because they can't get sick leave, but because being depressed is, by definition, miserable.
It's great that your husband would rather not see. But we need to have narratives that are equally accepting of the people who really wish they could see, and the social model of disability tramples all over us. The social model of disability is equally shitty about the kinds of intersectionality feminism gets criticized for daily. White men can get away with not having social skills. Women -- and people of color who might get shot, for that matter -- can't.
posted by steady-state strawberry at 8:17 PM on April 18, 2016 [3 favorites]
Things done on the ground that have nothing to do with my lived experiences or needs.
If your public library got a Braille section based upon the pleas of a group that portrayed blind people as helpless individuals who ought to be pitied, I'm sure your husband would be upset. I feel the same way. Getting playground equipment installed that's 'designed for children with ASD' is so far behind my concerns about the narratives around ASD and about how those things are dictated by white men that it's not even worth mentioning in the same volume.
There are millions of individuals with disabilities out there. Many of them haven't been diagnosed. Many, many more of those who have are people who would rather not have their disability. My father would rather not have arthritis -- not because his job isn't able to handle a wheelchair, but because it's painful and it means he can't do the things (furniture refinishing, gardening) he'd like to do without having to relearn how to do them all over again. The members of my family who have depression would rather not be depressed -- not because they can't get sick leave, but because being depressed is, by definition, miserable.
It's great that your husband would rather not see. But we need to have narratives that are equally accepting of the people who really wish they could see, and the social model of disability tramples all over us. The social model of disability is equally shitty about the kinds of intersectionality feminism gets criticized for daily. White men can get away with not having social skills. Women -- and people of color who might get shot, for that matter -- can't.
posted by steady-state strawberry at 8:17 PM on April 18, 2016 [3 favorites]
Getting playground equipment installed that's 'designed for children with ASD' is so far behind my concerns about the narratives around ASD and about how those things are dictated by white men that it's not even worth mentioning in the same volume.
Okay. Not sure what's happening here, so I'll step out now.
posted by mandolin conspiracy at 9:12 PM on April 18, 2016
Okay. Not sure what's happening here, so I'll step out now.
posted by mandolin conspiracy at 9:12 PM on April 18, 2016
It's better to avoid talking about people if you can listen to them.
This is a pretty big assumption: that the commenters are not also disabled people. It's not just that you can't see people on the Internet; many disabilities are themselves "invisible".
As someone who studies disability (and who has a chronic illness), I think that both the social model of
disability AND the personal model have value. We can recognize that people have different impairments - and act to treat those impairments (my meds keep me going), but also recognise that how disabling these impairments are can be mitigated (though often not eliminated) through changing society.
It's not an either or. You can do both!
posted by jb at 10:56 PM on April 18, 2016 [3 favorites]
This is a pretty big assumption: that the commenters are not also disabled people. It's not just that you can't see people on the Internet; many disabilities are themselves "invisible".
As someone who studies disability (and who has a chronic illness), I think that both the social model of
disability AND the personal model have value. We can recognize that people have different impairments - and act to treat those impairments (my meds keep me going), but also recognise that how disabling these impairments are can be mitigated (though often not eliminated) through changing society.
It's not an either or. You can do both!
posted by jb at 10:56 PM on April 18, 2016 [3 favorites]
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posted by tavella at 1:27 PM on April 18, 2016 [6 favorites]