Category: Essays

Additional Thoughts About Murderbot

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

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

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.

COVID Precautions

Jen

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

Shortly after posting the previous post (Three Years of COVID) on the night of December 31st I developed a fever and increased congestion. The very mild congestion had been there but felt normal for this time of year. After sleeping badly that night I took a COVID test early the next morning. It was positive almost right away – apparently that signals a high viral load. Fortunately I was able to get in touch with a doctor through my insurance’s virtual Doctor portal and obtained a prescription for Paxlovid which I started that night.

I stopped eating at restaurants early in 2020 when the pandemic started and started wearing masks when going to the store and other places I needed to go that were indoors. I’ve continued to do so, including wearing a mask at work when we returned fully to the office. As I said in the previous post it’s been frustrating watching everyone go back to normal and acting like the pandemic is over. COVID is still here and in Massachusetts the cases are increasing. The fact that I got it now after all this time is only proof that everyone should have been taking it seriously.

Some people would say that since I got COVID anyway, taking precautions is pointless. I think they’re either ignoring or misunderstanding that the precautions available – vaccines and wearing a mask and social distancing – were always about reducing the risk of getting COVID. Nothing is 100% – including COVID precautions. Just like wearing a seat belt and having an airbag in a car isn’t a guarantee you’ll survive a serious car accident, but they do improve your chances of getting out of it alive. It’s also true that the vaccines and boosters help reduce the severity of COVID if you do get it.

What truly bothers me about getting COVID now is if I hadn’t been paying attention I would have missed the fact that I was developing a fever the evening December 31st. Because of how mild my symptoms were, if I hadn’t realized I had a fever, I may not have tested myself for COVID. It also happened that I still had a few home tests left at home otherwise I would have had to wait for a PCR test. Given all of this it’s really not a surprise COVID is out of control, and that’s why I believe we should be continuing all of the precautions.

The argument that COVID is not any worse than the flu has always been wrong – especially since this is a new virus that we don’t know enough about even three years later. There’s increasing evidence that evan mild cases (like mine) can result in damage to the body and Long COVID symptoms. Also it was never actually a good idea to repeatedly get sick to start with. People may think it’s “normal” to get colds every year but avoiding getting sick has never been a bad idea. Staying home when sick has always been the best idea – the problem is that many schools and workplaces don’t allow for adequate sick time. As a result we’ve developed this mindset that getting sick is just the way things are because it can’t be helped.

There’s also a lot of misinformation going around about “immunity debt” and people insisting that we need to get sick in order to have a healthy immune system. The article “There’s no such thing as a good cold: “Immunity debt” can explain this year’s eye-popping cold and flu season — but it can also be dangerously misinterpreted.” does a good job of explaining how it isn’t safer to get sick than it is to avoid getting sick if you can.

I continue to believe that mask and vaccine mandates are needed to slow if not stop the spread of COVID. That said I also believe there have been situations where mandates have caused more harm than good because of how they’ve been implemented. For example disabled people living in group homes, or anyone living in congregate settings, who already had limited access suddenly having access to nothing. No contact with family, no access to medical teams or other therapies, no ability to even go outside because the staff wouldn’t take them. In many ways their safety was more impacted by the lock downs than COVID even while being at higher risks of dying from it.

There also continues to be a disproportionate response to violations of various rules regarding masking and social distances. There were several news articles about the numbers of Black people being arrested (sometimes violently) for not social distancing or wearing a mask compared to white people doing the same thing being ignored. There’s also been an increase in violence towards Asian people – blaming them for causing COVID. I strongly recommend reading Steven W. Thrasher’s book “The Viral Underclass: The Human Toll When Inequality and Disease Collide” for more on the disproportionate responses to how society deals with managing disease.

Additional Reading:

“The terrible toll of COVID-19 on people with intellectual disabilities” by Wendy Ross, MD at AAMC

“COVID continues to hit nursing homes harder, AARP data shows: Cases are surging everywhere, and nursing home residents remain more likely to face severe illness and death.” by Sara Luterman at The 19th

“The People Who Can’t Just Wear a Mask: The new CDC guidance provides hope for some of the people most isolated by the pandemic.” by Sara Luterman at Slate

“High-Risk Pandemic Stories: A Syllabus” a collection of various articles, blog posts and tweets created by Alice Wong at the Disability Visibility project: “Since March 2020 I have been collecting strands of disabled wisdom about the pandemic and trying to gather, weave, and share them. Disabled, fat, older, poor, immunocompromised, and chronically ill folks have been oracles well before this global public health disaster and continue to this day as institutions and leaders treat marginalized communities as disposable.”

“Long COVID: Long-Term Effects of COVID-19” by multiple authors at Hopkins Medicine

“Long COVID stemmed from mild cases of COVID-19 in most people, according to a new multicountry study” by Sara Wulf Hanson and Theo Vos at The Conversation

“Even mild Covid is linked to brain damage, scans show:
The new British research is the first to reveal striking differences in areas of the brain based on scans taken before and after a coronavirus infection.” by Benjamin Ryan at NBC

Three Years of COVID

Jen

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

I’m so frustrated that we’ve had three years of a pandemic that very few people have taken as seriously as they should. It’s been frustrating watching everyone drop all precautions and acting as though there’s no reason to continue being cautious. The news paper articles and other media mocking those taking precautions have been happening for a while but they’re getting particularly worse as those of us who are still taking precautions are largely viewed as fearful of everything.

The pandemic isn’t over despite what a lot of people want to believe. We never had COVID under control and most people never took it as seriously as they should have. Part of the reason for that is that the groups most impacted were minorities (Black and Indigenous people, disabled people and/or elderly people). People, including the director of the CDC kept saying only the old and already sick would die. The statement is horrible on its own but it’s also largely a lie given the numbers of deaths there have been from COVID at all age levels and health. But then some of us are used to pushing aside scary ideas and focusing on the positives…

In chapter three of their book “The Future Is Disabled” Leah Lakshmi Piepzna-Samarasinha has a section called “Death COVIDs” and Disabled Grief Access Intimacy” which begins with the following two paragraphs:

“Every single BIPOC person I know had an incredible number of people in our lives die during the pandemic. A lot of us weren’t strangers to death, we’d lost people to suicide or gun violence or cancer before. But the past two years of COVID and the triple pandemic have meant we’ve often lost more people, more quickly, than ever before. I know friends who’ve planned seven funerals since 2020, or lost four people they loved in one month.

And it’s been my experience that a lot of even my white disabled friends were uncomfortable with this kind of mass death faced by their BIPOC disabled friends. They lost people too, but it wasn’t quite at the same level. And they didn’t know how to deal with it when we did.”

Later on in the same section Leah Laksmi talks about the difference between their experiences with COVID – “death COVIDs” and other people’s (mostly white) experiences with COVID – “boring COVID”. I’m admitting my own privilege here – I’m one of the people who experienced mostly boring COVID, at least in terms of my personal life. While I know people who have gotten sick none of them have actually had a serious case or died from it. Which is probably why even at work we’re mostly back to normal. For some value of normal… we should all be thinking about what normal actually means.

Imani Barbarin of the blog Crutches and Spice has an great blog post on that subject: “You’re Never Getting “Normal” Back”

“We cannot afford normal—and it seems that only the privileged are the ones who can actually afford to return to it. To want normal says that you have identified all of the issues put on display and said, “I’m fine with that.” Unfortunately, the rest of us cannot be and never have been alright with normal. […]”

I know exactly how privileged I am in that I haven’t yet gotten sick with COVID, nor has anyone in my family died from it. At least not yet – given how the rest of my family has mostly gone “back to normal” it’s probably only a matter of time.

Edited May 2023

For various reasons I do not wish to discuss at this time I am no longer involved with Marked By COVID. As such I have removed all links to that group.

Another group I’ve been following is the COVID-19 Longhauler Advocacy Project which formed in 2020 and has become “an organization known for comprehensively advocating on behalf of the Long COVID community” – Long COVID is another thing people aren’t taking seriously enough. People don’t seem to realize that even if they’re lucky enough to survive COVID they could still end up with Long COVID symptoms. I know a handful of people who are now experiencing Long COVID – though not directly within my personal life.

I’ve also been following the People’s CDC and their reports about COVID levels as it’s become clear the official CDC can no longer be trusted to give an accurate picture of COVID. “The People’s CDC is a coalition of public health practitioners, scientists, healthcare workers, educators, advocates and people from all walks of life working to reduce the harmful impacts of COVID-19.” They’ve been posting weekly “Weather Reports” about COVID – the latest one is from December 25th.

Soon I’m going to write another post about COVID precautions that we should be taking but also about how those same precautions have disproportionately impacted various groups of people. Because both things are important to be aware of as we go forward with 2023. COVID isn’t over and how we handle it speaks to how we care about others. Meanwhile check out the additional readings and links below

Additional Readings

“‘We’ve always been surplus’: Individual tragedy and collective trauma from COVID: Survivors organize toward the first statewide memorial for COVID in the U.S.” by Austin Fisher at Source NM

“Op-ed: Move on? When it comes to COVID-19, we need an official Memorial Day” by Jennifer Ritz Sullivan at Metrowest Daily News

For the Uninsured, COVID Care has Entered a New Stage of Crisis by Noah Weiland and Sarah Kliff at Yahoo News

“Study: Covid’s racial disparities made some white people less vigilant about the virus: A researcher said that the findings show that white people tend to care less about Covid and its impact when they believe it is “not a white people problem.” by Char Adams at NBC News

Social Media Links for Mentioned Organizations and Individuals

COVID-19 Longhauler Advocacy Project on Twitter

COVID-19 Longhauler Advocacy Project on Instagram

People’s CDC on Twitter

People’s CDC on Instagram

Why Bother Making Things Accessible?

Jen

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

A lot of people will ask that question because for the most part they go through their lives without needing to think about how difficult things can be. Sometimes even when they do experience some difficulty they’ll think “that’s just the way the world is” without considering if it could be better. Sometimes the only reason why things are at least somewhat accessible is because it’s the law.

A blot post from AssistiveWare asks Why isn’t the world accessible in the first place? for Global Accessibility Awareness Day.

If we believe that accessibility is important and we should be implementing it, why don’t we already consistently and thoroughly account for disability in design? Is it just a knowledge gap, or is there more at work?

In my previous post The ADA at 32 I talked about how many people don’t really have a full understanding of the limites of the American’s With Disabilities Act. They will talk about how things are “illegal now” or to simply “call the ADA” to report issues. Things can and should be made better and it’s a struggle to get people to understand why things should be improved for all of us. I also included a few links in that post about how the ADA does not go far enough.

My answer to “why bother?” is “why not?” – I mean honestly why not make things accessible to everyone? The problem is as I said above the majority don’t even see the problems that do exist. It isn’t a problem for them so they don’t bother thinking about it. As a result accessibility depends on people actually fighting for it and continuing to make noise about the various issues that exist.

Accessibility Benefits Everyone

But let’s look at it another way – accessibility isn’t just for disabled people, when done correctly it can benefit everyone.

Why Designing For Accessibility Helps Everyone written by Daniel Abrahams at Access Innovation Media:

Automatic doors can also save businesses money – they open only when needed, they cut down on energy waste which directly implies a reduction in heating costs plus no fingerprints on the doors either so no need for extra cleaning.

Getting Accessibility Right

We still need to make sure things are accessible to all those who need it. Often accessibility is denied without thought because someone believes it isn’t worth the cost or the time. Sometimes it’s about a lack of awareness of what is needed or assumptions being made about the types of accommodations that should be offered.

For example I’ve seen situations where only a sign language interpreter was offered and when captioning was requested as well it was denied because “there’s an interpreter provided” – which ignores the fact that many who are hard of hearing don’t know sign language and still need captioning. Of course there’s also the assumption that automocati captions are good enough without realizing just how bad auto captions are.

Another example is in webinars the sound quality may be bad and when it’s pointed out people are directed to the captions that exist. The problem with this is that people with cognitive issues may not be able to read the captions and are depending on good sound quality.

In both examples any attempts to point out issues are dismissed because people believe what they have done is enough.

About Competing Accessibility Needs

Competing accessibility needs do exist. Sometimes making things accessible for one group will make things inaccessible for another. Attempts to mitigate the problems should be made but it should also be acknowledged that it isn’t always possible. There are things that should be done to address the issue however.

Understanding Competing Accessibility Needs by Brooke Winters at Thinking Person’s Guide to Autism:

It may not be possible to make every single event accessible to every disabled person but there are steps we can take to make sure that every disabled person has events that are accessible to them.

Final Thoughts

Accessibility is always a work in progress and I believe we should always try to do better. We should notice when things are difficult and we should make noise about it when possible. It’s important to remember that the Americans With Disabilities Act often depends on disabled people to voice complaints about inaccessibility before anything is done. Nothing changes unless someone says something so people should say something.

About Limits

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 ADA at 32

Jen

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

The Americans with Disabilities Act (ADA) was created in to prohibit discrimination against disabled people. At least the ADA was intended to prohibit discrimination – many places are still inaccessible and discrimination still exists 32 years later. Many businesses have spent the last 32 years, and money, arguing why they shouldn’t be forced to change their buildings rather than changing them. Employers still use “not a good fit” to cover a multitude of sins. Even when employment is granted accommodations are routinely denied for a number of reasons or the person ends up fired. The general public doesn’t seem aware of the issues – instead arguing “it’s illegal!” Or “Call the ADA” without realizing the burden is on the disabled person to sue the employer or business that is violating the law.

Here’s an article that details a few examples: Advocating for ‘tough issues’: ADA enforcement often falls to people with disabilities

During the pandemic many of the accommodations that disabled people had been asking for years were granted only because everyone needed them. Some examples include being able to work from home, virtual doctor visits and other events that became virtual. As soon as everything started opening up again those accommodations were taken away. People were encouraged to return to the office, and many of the virtual options were discontinued as soon as in person events could happen again. But the fact that the accommodations were granted only shows that it is possible to have that kind of access.

The ADA has always been under threat – many lawsuits have gone through the courts, some that could have led to the ADA being gutted because certain groups felt that the ADA required too much from business and employers. Because of recent actions by the Supreme Court disability rights lawyers are increasingly hesitant to file lawsuits because they fear it will give the court a reason to gut the ADA. Read the article at MSNBC.com – “How this Supreme Court is setting back disability rights — without even trying” by Eric Garcia, MSNBC Opinion Columnist

Back in July 2020, Cal Montgomery, wrote a blog post “I Will Celebrate ADA30” in which he noted additions problems with the ADA:

“But the ADA represents a hollow promise. It was never meant for all of us. It was always intended to protect some disabled more than others, and still other disabled not at all. And the independent living movement, which plays an enormous role in cross-disability agenda setting, has focused on the kind of “one and done” accessibility that is coded into the ADA Accessibility Guidelines (ADAAG) (and even then only some people’s “one and done” needs are addressed) rather than the ongoing work of negotiating the fluctuating and complex access needs of individuals, groups, and communities.”

The ADA may have done a lot to improve the lives of disabled people in the 90s but it never went far enough and these days it seems like it could be gutted at any time because certain groups don’t believe others should have access to anything.

Be sure to also read: A Letter to the Americans with Disabilities Act on Its 32nd Birthday by Sandy Ho posted earlier this week.

The moment that photo captured, your passage, was just the beginning. As we both know by now, the first step in every struggle for civil rights is necessary but hardly enough.

Disability in Science Fiction

Jen

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

I wanted to include Science Fiction as a subject for this blog because it is my favorite genre and has been since I was very young. It’s also always been something I’ve wanted to see more and better disability representation in. Everyone wants to see themselves in media portrayals, including disabled people. Unfortunately the quality of disability portrayals is often lacking, Science Fiction for example, favors the idea of curing everything. It’s not that cures are always bad but often it ends up seeming like it’s more about convenience more than need. Take Geordi La Forge on Star Trek The Next Generation for example. He was Blind and used a VISOR to see. In one episode he visits Doctor Pulaski to find out there was a way to update his VISOR because it was causing headaches. It starts off reasonable – he’s having pain so he should see if there’s a solution. But Doctor Pulaski seemed to just jump to the idea of giving him “real” eyes instead of fixing the VISOR. There’s some additional details and it could have been something Gordie was interested in but it ended up feeling like she cared more about giving him “real” eyes instead of improving his quality of life. There’s a difference between someone choosing something for themselves and having it encouraged by a doctor for convenience. There’s many other examples if disability in Star Trek that are just as frustrating. Its annoying have my favorite TV show franchise do things so badly when it comes to disability. Even when the get some things right they ultimately fail at it.

But I don’t want to spend this entire post talking about Star Trek and it’s issues. I’d rather talk about some books I’ve read that had good portrayals of disability, written by disabled people. Here’s the thing about disabled people – we figure a lot of things out on our own because often no one will do it for us, or only focuses on what they think is important. So of course we’ll write our own stories and when we write our own stories they’re not all doom and gloom or about pity. They can be angry and scared and painful but there’s also hope and fighting for what we need. And survival, because that’s what we’ve always done.

Fiction

“On the Edge of Gone” by Corinne Duyvis – an apocalyptic science fiction story with an autistic main character (written by an author who is also autistic), set in 2035 and it begins with a comet about to hit Earth. The main character, Denise, is trying to deal with the fact that her sister is currently missing and a mother who doesn’t seem to understand or care about the urgency of the situation. Once they do reach safety it’s all about Denise trying to find her sister while also dealing with the assumptions of everyone around her.

Note: I’ve used the author’s stated language preferences. The author has a few other science fiction novels that I haven’t yet read and co-founder and editor of Disability in Kidlit. Check out the author’s website here: https://www.corinneduyvis.net/

“Accessing the Future: A Disability-Themed Anthology of Speculative Fiction” edited by Kathryn Allan and Djibril al-Ayad. The book contains stories by fifteen disabled authors and nine artists. There are a lot of different types of stories in the book with a lot of different ideas about how to do things. Be sure to read both the preface and introduction for some good information about the intent of the book.

“Defying Doomsday” and the follow up “Rebuilding Tomorrow,” anthologies edited by Tsana Dolichva and Holly Kench – In a lot of media about the end of the world disabled people are usually left behind die or end up sacrificing themselves to save others. It’s usually seen as noble because the disabled person would slow everyone down or be a burden. In these stories the disabled characters save themselves and keep on going. Again there are a lot of different kinds of stories here. The follow up book has both sequels to stories in the previous book and new stories.

Non-Fiction

“Being Seen: One Deafblind Woman’s Fight to End Ableism” by Elsa Sjunneson. Written mostly during the pandemic and released late last year. She mixes personal stories with deafblind history and criticisms of portrayals of disability in various mediums.Note: deafblind or DeafBlind is intentionally written without the space and is the preferred way for many in the deafblind community.

“Disfigured: On Fairy Tales, Disability, and Making Space” by Amanda Leduc – this one is about fantasy portrayals of disability more than science fiction but the point is still the same. Disfigured is a collection of essays that Amanda has written detailing several different types of disability portrayals in media and the stereotypes and assumptions that often go with them.

The Language of Disability

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.