Tag: Ableism

Additional Thoughts About Murderbot

Posted on by Jen

Note: This was originally posted along with my review of “Artificial Condition”, before I decided to move it to a separate post.

As much as I’ve enjoyed the first two books in “The Murderbot Diaries” by Martha Wells I have to say I have mixed feelings with the way intelligence is talked about in these books. Murderbot thinks of itself as superior to all other AIs because it hacked its governor unit and is no longer being controlled by the company. It also thinks itself superior to all humans. It has a lot to say about the intelligence of everyone – AI and human alike. Sometimes going as far as making judgements about the usefulness of those who are less intelligent. Since the books are from Murderbot’s POV the bias can be interpreted as bias on the character’s part more than the narrative suggesting it but it was something I noticed.

I also made note of how humans a categorized as human and augmented humans and it’s not clear who is augmented. Can anyone be augmented or are most of them previously disabled humans who need assistive tech like hearing aids or glasses? If most of them are in fact disabled humans then there’s some negative implications about the distinction. Though again it’s Murderbot’s POV and if it categorizes people that way because it feels closer to augmented humans than humans that’s different.

I do feel the way Murderbot feels superior to everyone and free to call everyone unintelligent (the word stupid is used a lot) is a problem. The idea that one is better than someone else just because they’re smarter is not the greatest idea to hold. It’s the root of eugenics and the reason people with intellectual disabilities are treated badly by everyone including people with physical disabilities who often try to distance themselves from the idea they may be unintelligent. “I may be physically disabled buy my brain is fine” ableism is rampant. People with varying degrees of intellectual disabilities have been categorized in the past with their level of usefulness for jobs and I see hints of that in how Murderbot talks about the various AIs it has worked with in the past and encounters on its journey. The idea of dumb vs smart technology may be a thing that is common in Science Fiction and talking about AIs but we should all be aware of where it comes from and what it means when applied to people.

It’s true the humans Murderbot encounters are putting themselves at risk and making choices that would have gotten them killed if not for Murderbot being there to protect them. But is that really a lack of intelligence? Are they really stupid or merely young and inexperienced with how bad things can be? Should they “know better” or have they not yet had the opportunity to learn because they are young? Even for those who should “know better” the choice is still theirs to make. We may think those choices are wrong but if they know the risks and make them anyway are they really “stupid” or just reckless with their lives? While it’s true people use “stupid” as a short cut for a lot of flaws, that is in fact the problem. We make these kinds of judgements all the time and feel superior because we apparently smarter than those who make “poor choices” but I’m sure somewhere along the line we go out and make a choice someone else would question us about.

Previously I wrote an essay called “The Problem of Intellectual Ableism” that I think is relevant to this post. Give it a read. I don’t believe the problems I see in this book are entirely intentional, and I don’t have anything against the author for any of this. The issues I see in the Murderbot Diaries are present everywhere to varying degrees as they are systemic issues. People often use intelligence based insults whenever they judge others – which is the whole problem. These books just seemed to emphasis that a lot because of Murderbots superiority complex. At least in this book Muderbot learns that it can be wrong in its assumptions – it originally assumes ART is a “dumb bot” before it learns better. Still… the assumptions were made, as they often are about intelligence and worth.

How we talk about disability

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

The way we talk about disability matters but the complicating factor is that different people and different groups have different preferences. People with intellectual disabilities tend to prefer person first language and the concept of “see ability not disability”. This is because of the long history of being dismissed and looked down on by everyone including those with physical disabilities. If you’ve ever used the phrase “I may have a physical disability but my brain is fine” you’ve contributed to. On the flip side people with physical disabilities and some developmental disabilities (like autism) tend to prefer identity first language and usually (but not always) don’t find the use of the word disabled offensive. Some don’t like to use the word disabled but instead prefer to only use the name of their identity – Deaf or Autistic for example. None of this is 100% true all of the time but in general it’s a good baseline to understand.

When we talk about accommodating disabilities there is often a focus on the deficits that the accommodations are helping with. This individual can’t hear so they need closed captions or ASL interpreters; this individual can’t walk to they need a wheelchair; and so on. This is especially true in education settings for children who have IEPs. Because of the way school systems focus on their budgets they tend to focus on how much something will cost. This results in parents having to fight to get the accommodations their child needs by emphasizing their disabilities in order to prove that the need exists, instead of being able to focus on how the accommodations would help them succeed in school. This battle often repeats each year because school administrations will want to take away accommodations if they see an improvement. The argument the school will use is that the child has improved so the accommodation obviously isn’t needed anymore, ignoring that the child is doing better with the accommodations and taking them away would mean not doing as well.

Because there is such an emphasis on deficits in education there ends up being a push for “seeing abilities not disabilities”. It becomes especially true for people with intellectual and developmental disabilities as they fall behind their peers in school. Sometimes this is the case before they even start school when doctors tell parents that their children won’t amount to much because of their disabilities. So naturally organizations like Special Olympics will focus on proving what people with intellectual disabilities are capable of doing rather than what they can’t. Special Olympics is of course focused on sports so there is an emphasis that sports don’t see disability. There’s nothing really wrong with this thinking in a general sense. It is important to see that a person can be capable of things and not make assumptions based on their disabilities. That’s why people act so amazed when a person with Down Syndrome completes a Marathon. There’s an assumption that they can’t possibly run a marathon, when the truth is they often can with enough training and enough support just like anyone else.

Of course limitations will always exist (even without disabilities in the mix). The key is not allowing other people to enforce false limitations on a person, but also acknowledging the real limitations that exist. Because, ignoring a disability completely will cause harm if not acknowledged. It’s also a problem when people say “if this person with a disability can do this why can’t you?” ignoring that everyone’s abilities actually are different. That’s why my preference is to see the disability along with the ability. I’m still hard of hearing regardless of having a hearing aid. My hearing is not 100% – there will still be times I don’t hear something and people will need to repeat themselves. I also still need closed captions to watch videos or TV shows – the sound is not clear enough to hear everything and there is usually background noise. So yes I still need people to “see my disability, not just my abilities”. But I do think we can change how we talk about our disabilities so that it’s not always about the deficit. Just saying I need people to repeat themselves or captions should be enough without having to explain that I am hard of hearing. There shouldn’t be a reason to have to prove anything. Access needs should be understood and accepted across the board.

Additional Reading

“I Shouldn’t Have to Dehumanize My Son to Get Him Support: Instead of focusing on the challenges facing disabled people, we should emphasize goals.” – by David M Perry at “The Nation”

“The Problem of Intellectual Ableism” posted by me on this blog.

“About Limits” posted by me on this blog.

The Problem of Intellectual Ableism

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

Content note: this post contains the r-word in a quote. I’ve decided to leave it in because it’s spoken by a person with intellectual disabilities making a statement about their own experiences and wishes.

There’s a lot of emphasis on intelligence that results in throwing people with intellectual disabilities under the bus. Most if not all of us end up doing it one way or another when we talk about intelligence as if it is the most important thing for someone to be. Those of us who have physical or sensory disabilities will often say things like “I may have x but my brain is fine!” – indicating that people should focus on our intelligence above all else because that’s what matters. The implication is that it would be okay to treat us badly if we had an intellectual disability.

And what does intelligence even mean anyway? In a post from 2018 liminalnest wrote:

“When you actually try to pin down what some sort of inherent “intelligence” is vs “has learned some stuff, addresses ignorance” It becomes clear that intelligence is a social construct That is used to maintain privilege and also oppress others”

Read the full post: “Intelligence is a myth : on deconstructing the roots of cognitive ableism”
Posted on June 23, 2018 by liminalnest

Part of the problem of course is how quickly we judge people for not understanding something. People with intellectual disabilities are treated as if they can’t possibly ever understand anything which causes them to become infantilized no matter how old they actually are. A lot of assumptions get made about a person intelligence and competence if they don’t automatically know something others think they should. Very few take the time to figure out why someone might not know something. Maybe they never got the chance to learn. Maybe they do need it broken down into easier concepts to fully understand.

I recommend reading all of Cal Montgomery’s work but his post “On Stupidity” is particularly relevant, especially the section where he was telling the story of how he was teaching a group of women from a group home about calling 9-1-1 and made a critical mistake.

“If you know the number to Nine-One-One (it’s 9-1-1), it’s really obvious. If you don’t, and if you are accustomed to all kinds of things having all kinds of confusing names, it’s not. It’s really not. And instead of preparing these women to be ready to take decisive action in an emergency, as they had asked me to, I had set them up to fail badly at a moment when failure would have had real consequences. I was not doing fine. I had prepared them to be stupid at a moment when they could have been brilliant and saved a life. And they weren’t going to ask, because their whole lives they had been encouraged to accept that they were just not the kind of people who know things, to accept that nobody is going to slow down and make sure they have the tools to learn.”

There’s a reason why people with intellectual disabilities still prefer person first language. Don’t be fooled by people who insist that it was created by non-disabled people. People with intellectual disabilities came up with it and asked for it because they knew exactly how badly they were being treated.

From “The History of People First”

On January 8, 1974, the People First movement began in Salem, Oregon, with the purpose of organizing a convention where people with developmental disabilities could speak for themselves and share ideas, friendship and information. In the course of planning the convention, the small group of planners decided they needed a name for themselves. A number of suggestions had been made when someone said, “I’m tired of being called retarded – we are people first.” The name People First was chosen and the People First self-advocacy movement began.

Yes it’s true that the organization started with parents who said they “spoke for them” but here’s the first from the same article:

People First is part of the self-advocacy movement. The movement began in Sweden in 1968 when a Swedish parent’s organization for children with developmental disabilities held a meeting. The organization had the motto, “We speak for them,” meaning parents speaking for their children. The people at the meeting decided they wanted to speak for themselves and made a list of changes they wanted made to their services

No one forced person first language on them – it was entirely their choice. This is one of the many reasons those of us with physical and sensory disabilities cannot act as though identity first language is the only way to speak about us. The long history of people with intellectual disabilities having their choices taken away from them is another. It’s the whole reason they wanted it in the first place. It’s why “see ability not disability” continues to be important to many people. Because there are disabilities that result in dehumanization and choices being taken away more often than others.

It’s true many of us with all kinds of disabilities have assumptions made about us but it’s how we respond to those that remains important. We cannot continue to focus on intelligence as the only thing that matters. We cannot continue to throw people with intellectual disabilities under the bus. When we do we’re no better than the people who make the ableist comments and assumptions about us. We all deserve to be treated with respect no matter what our disabilities are because we’re people.

About Limits

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

When it comes to disabilities there are two kinds of limits:

The ones that actually exist in our bodies. And external ones that others place on us.

Because of ableism others will insist that there are things we can never do. Proving them wrong is always the goal.

Because that’s how we survive.

At the same time we need to figure out the real limits that exist and respect those. Because pushing too hard against the real limits can cause more harm than good.

It’s up to us to figure out and manage both of them. Because of ableism, it’s easy to get the two mixed up.

That’s the challenge.

I posted the above on my Instagram a while ago and I want to expand on it a bit. There’s so many examples of this out there.

There’s more than one person with Down Syndrome who has run a marathon for the first time. That’s an example of the first. People assumed that a person with Down Syndrome couldn’t possibly run a marathon, obviously some can. Just like anyone else, and it’s not really a surprise. But the problem is some of the language around it includes wording like “overcoming disability” or “despite their disability” which only adds to the problem. It’s not overcoming a disability, it’s overcoming ableist assumptions about that disability. It’s also important to remember that not everyone can run a marathon no matter who they are. Saying “if they can do it anyone can” is dangerous. It also downplays the person’s accomplishments because running a marathon is hard. They worked hard for it and they deserve to be praised for that hard work.

Knowing your own personal limits is important for your health and safety. It’s true that some people, disabled or not, will always push themselves and take risks. That’s fine for them if they know the risks but at the same time they should be asking themselves if it’s worth it. There are some things that just don’t seem worth it, like doing permanent damage yourself. And in this case I’m speaking of all kinds of people in all kinds of situations. I get that for some people playing sports is a way out of the situation they’re in but it still seems like in some cases the outcome wasn’t worth it.

I’m hard of hearing and people assume that because I wear a hearing aid my hearing is normal. What they don’t realize is that being hard of hearing means I don’t have the ability to filter out background noise like other people do. Everything is amplified with the hearing aids so in order to not be bothered by things like air conditioners running I have to turn my hearing aids down. It also means my ability to hear someone depends on where they’re standing and how close. I’m not going to hear someone behind me or facing away from me. These are real limits that actually exist for me. Ignoring those limits means I don’t hear things. If I don’t make someone turn around and face me and/or repeat things I miss out. I have to remind people that I am in fact hard of hearing.

Some might say that I should just keep my hearing aid up all the time so that I can hear everything and not make other people responsible. Well I’ve tried that and you know what happens? I get a headache and I still don’t hear everything anyone says because I’m mostly just hearing the background noise because it’s so loud. I have no choice but to advocate for myself and tell people what I need.

Dealing with both types of limits is hard – learning which ones are the fake ones placed on us and learning which ones are real will always be complicated. Sometimes the ones placed on us by others are also real ones – and sometimes what we thought were real ones turn out to be ones we were told by others years ago and didn’t realize it. Sometimes the limits are only limits until we are given the tools to figure out alternate means of doing things and everyone around us accepts those modifications. We don’t need to be like everyone else to accomplish things, we need to be allowed to accomplish things in our own way.

The Language of Disability

Posted on by Jen

Note: Originally posted on https://jenrohrigdesign.com/

Person First or Identity First Language

A while ago I took some courses in accessible design related to the Americans with Disabilities Act. One thing I noticed is the emphasis on person first language. Person first language is well intended and is still preferred by many people with disabilities – most often people with intellectual disabilities. But there is also a growing number of disabled people who prefer identity first language – most often autistic or deaf people. There’s a lot of debate over which is preferred and why people prefer one over the other.

I’m aware a lot of teaching manuals for accessibility and disability still push person first language. I’m also aware that it can be hard to adjust when you’ve been told by those in authority which to use. In the end what really matters is the preference of the individual. One of the issues that comes up with person first language is the tendency of non-disabled people to insist that it must always be used while ignoring the voices of disabled people who say otherwise. Disabled people or people with disabilities have the right to make their own choices. That’s the point that seems to be overlooked in the instructions.

The blog post “Identity First Language” by Lydia Brown goes into further discussion about identity first language vs person first language. There are also several links at the bottom of the post three different preferences including using both interchangeably which I’ve been trying to do with this post. Note that many of the links now link to the web archive as the original blogs have been deleted.

A Brief Mention of Disability Euphemisms

My opinions on the use of euphemism in place of disability could be a whole other post. The short version is I believe euphemism are another well intended thing that ends up feeling condescending more often than not when non-disabled people use them. Others may disagree but that’s how I feel. Again it’s important to listen to others about how they want to be referred to. If another disabled person prefers a euphemism use it. I’m aware some of them were in fact created by people with disabilities which is why I’m not completely against them. It’s the way they’re used, not that they exist that’s the problem.

What Does Ableism Mean Anyway?

Something I’ve also noticed over the years is the lack of awareness about ableism and what it means. I can mostly understand the average person not knowing about it, but it bothers me that anyone who works in disability or accessibility related fields doesn’t know what it means. There are different ways to explain what ableism means:

From Access Living’s “Ableism 101” article:

Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.

I also like Talila A. Lewis’ or TL’s “Working definition of Ableism“:

able·ism /ˈābəˌlizəm/ noun A system of assigning value to people’s bodies and minds based on societally constructed ideas of normalcy, productivity, desirability, intelligence, excellence, and fitness. These constructed ideas are deeply rooted in eugenics, anti-Blackness, misogyny, colonialism, imperialism, and capitalism. This systemic oppression that leads to people and society determining people’s value based on their culture, age, language, appearance, religion, birth or living place, “health/wellness”, and/or their ability to satisfactorily re/produce, “excel” and “behave.” You do not have to be disabled to experience ableism.

TL’s poist “Longmore Lecture: Context, Clarity & Grounding” provides more detail about TL’s working definition and the connection to racism.

Final Thoughts

The language of disability can be tricky because different people will tell you different things and you will see conflicting messages. My hope is that people start taking the time to figure out where the message is coming from and respect individual choices. I also hope that people start learning more about ableism and how it impacts disabled people. Learning never really ends and there’s always changes.