Tag: Ableism

Person First Language and the Ableism of the Current Administration

Posted on by Jen

Person First Language Has Good Intentions

There’s a reason why people with intellectual disabilities fought so hard to have person first language used in place of the R-Word, and other words to describe them. Because for a long-time people with intellectual disabilities were hardly seen as people. They were called things like “useless eaters” because they were assumed to not be capable of anything. There’s a really disgusting chart from the past that categorizes people with intellectual disabilities in different groups based on their ability to work – because that’s how worth was determined. It’s where several of the intelligence-based insults, that people are so fond of using, came from. Ableism and Racism have a long history together – when slaves were brought over to this country they were also categorized based on ability to work. Slaves were never really seen as human – just a group that can be forced to work for others.

Is it any wonder that people with intellectual disabilities fought so hard for person first language? In an attempt to make people see them as humans who deserved the same rights and dignity as everyone else? Whether or not it changed anyone’s hearts and minds is not the point. The point was to be heard and seen as people. The point was to make people pay attention and realize they were not going to be ignored anymore. Fighting to get out of institutions, fighting to have a space in society along with everyone else. And all too often even people with physical or sensory disabilities look down on them too. Anyone who has ever said “I may be physically disabled / need a wheelchair, but my brain is fine” in an attempt to prove themselves worthy of respect has thrown people with intellectual disabilities under the bus in the process.

Identity First Language Has an Additional Goal

While there is a current push to use identity first language I believe we cannot ignore the reasons why person first language was wanted in the first place. I also believe people without disabilities should never be allowed to force us to use one or the other. Especially not in the condescending way they usually do, like saying things such as, “Oh honey don’t call yourself disabled!” As if we’re children that need to be saved from the horrors of being called disabled. At the same time we should all respect each other’s language choices. Yes even those euphemisms like “differently abled” because again often they were in fact thought up by people with intellectual disabilities for the same reason.  I don’t like them either, but they exist for the same reason person first language does.

Part of the reason for the shift to identity first language is that many of us view our disabilities as part of our identity. We wouldn’t be who we are without being disabled. We’d be entirely different people because our disabilities do help define who we are. The point of person first language was to make people see us as human first. That assumptions about ability should not be made based on whatever disability we happen to have. Person first language was always good and well-intended but when it goes as far as not seeing disability at all, I think it can do more harm than good. We do in fact have disabilities that disabled us, we do in fact have limits that need to be understood in order to prevent harm. It’s the assumptions about ability that are bad. While our disabilities do define us, the ableist assumptions of others should not.

The Ableism of the Current Administration

I think right now the current administration highlights all the reasons why person first language was wanted in the first place. The current administration doesn’t see anyone who isn’t a wealthy cisgendered, white, non-disabled male as fully human, as a person worth protecting. In their minds if we’re sick or disabled or homeless or poor we should just disappear (or die) so that we stop being a drain on society. We need to keep reminding them that we do exist and that we are worthy no matter who we are. Because none of this is new. No matter what laws have been enacted there have always been people who wanted us to go away and not cause problems for them. Because ultimately people don’t care enough about other people.

It’s clear that all the rights have been fought for in the past are being chipped away as we speak because the current administration has declared everything too “woke” as if it was a bad thing to care about others. As if empathy and respect for other people is a bad thing. The rights of BIPOC individuals, Women, LGBTQIA+ individuals, and Disabled individuals are all under attack by the current administration because some old, white, non-disabled, straight men feel attacked. Because they don’t like hearing the truth about what has been done in this country to anyone who isn’t like them. The reality of it is that we will always be fighting for our rights. For many of us there hasn’t been a single day when we weren’t fighting for something. Because this country hates anyone that isn’t cisgendered, white, male and non-disabled. You can see it in everything that is going on right now.

In Conclusion

Language does matter – we shouldn’t be allowing the R-word to make a comeback after people with intellectual disabilities fought so hard to get rid of it. But if we’re not actually changing people’s hearts and minds about disabled people (or people with disabilities) then we’re just arguing over semantics.  If we’re allowing the current administration to take actions to remove people from society then we’ve failed at our basic duty to each other. And we’ve really failed each other if we do the work of eugenics for them by suggesting that some people do belong in institutions or to be removed from society for not fitting in. We should be fighting for all of our rights and to include everyone and not leaving anyone behind.

Additional Reading

My LTEs, Op-Ed, and Newsletter

Posted on by Jen

I’ve had two Letters to the Editor and an Op-Ed published in Local Newspapers:

Letter: ‘We need to improve our healthcare systems and access to mental health’
Community Advocate May 19, 2025 (Scroll down to the bottom of the page to read the letter)
Opinion/Guest column: Kennedy, Trump not ‘helping disabled
Published in the Worcester Telegram & Gazette on May 4, 2025
Letter: ‘We are all in danger from the current administration’
Published in the Community Advocate April 13, 2025 (Scroll down to the bottom of the page to read the letter)

I also started a newsletter which is primarily a weekly list of disability related news:
Jen’s Newsletter Archive

Recent statements by both Dr. Oz and RFK, Jr. should be viewed with alarm

Posted on by Jen

“It is your patriotic duty, I’ll say it again, the patriotic duty of all Americans to take care of themselves because it is important for serving in the military, but it is also important because healthy people don’t consume health care resources,” Dr Oz during his swearing in a ceremony at the White House in April 2025

“Autism destroys families, and more importantly, it destroys our greatest resource, which is our children,” […] “They’ll never pay taxes, they’ll never hold a job, they’ll never play baseball, they’ll never write a poem, they’ll never go out on a date. Many of them will never use a toilet unassisted.” RFK Jr. an HHS press conference in Washington, D.C. on April 16th.

These are dangerous words, and it doesn’t matter if it seems like they are talking about specific groups of people who are disabled or unhealthy. When you start down that path you end up with anyone who doesn’t fit a narrow definition of “normal” being excluded from society. We cannot allow this rhetoric to be believed and accepted. All lives are worthy no matter what they can or cannot do. The ability to work and / or pay taxes should not be a determining factor of who is worth keeping.

Their rhetoric around disability and illness has strong elements of eugenics. Both highlight the idea that people who are disabled and/or unhealthy, and are unable to work are harmful to society. Their attitude seems to be that people who are ill and/or disabled cost too much money and if we weren’t around spending money everything would be fine. They also seem to be big on the idea of “personal responsibility” in a way that implies that any illness or disability is the fault of the person who has it rather than something that happens. They are suggesting that if we ate better food and exercises we would never get sick or ill and our children would never be disabled. All of this is untrue and harmful to those of us with disabilities and/or chronic illness.

Additional Reading

“Disability, Eugenics, and the Value of Human Life” by Talia Lavin at The Sward and the Sandwich

“RFK Wants to Send People to ‘Wellness Farms.’ The US Already Tried That” by Kathryn Waring at Teen Voque

“All Autistic People Have Value, Something RFK Jr. and Profound Autism Parents Refuse to Understand” by Shannon Des Roches Rosa at Thinking Persons Guide to Autism

Existing As I Am

Posted on by Jen

As someone who has spent their entire life proving the doubters wrong with regard to disability, I am not surprised at the way things are going. When you live in a world where a baby’s potential value is judged within days after birth, it’s not surprising that some people would rather we just disappeared (or died).

I was born in 1979 in Texas, of all places. Apparently I came out the blue and it took a lot of work to keep me alive the first night. At least one doctor told my parents that even if I lived I’d be blind, deaf and intellectually disabled. Thankfully there was another doctor who said I’d most likely be fine. There’s even a story that I kicked out the sides of the incubator I was in at one point. Here I am four and a half decades later, and while I’m hard of hearing, have a facial disfigurement and vision issues, there’s no sign of an intellectual disability. Not that it should have mattered. All lives are worthy – having an intellectual disability shouldn’t have meant I was better off dead or institutionalized either.

A large issue with having to prove doubters wrong is the way we have to constantly prove our worth. Things like excellent behavior, getting the best grades in school, going to college, graduating with distinction, getting a good job and doing our best at it, are all signs that it is worth keeping us alive. We’re proving our worth to a society that thinks we shouldn’t exist at all. We shouldn’t have to prove anything – a disabled person who doesn’t do well in school or a job and struggles with everything shouldn’t deemed less worthy than someone who is successful. You only have to take one look at media that glorifies successful disabled people and says things like, “they never let their disability stop them” to see the truth. In reality it almost never is our disabilities stopping us. It was the ableism of society making assumptions about our worth. 

It’s not surprising that society also judges people based on their relationships. We’re supposed to date, get married and have kids all for the betterment of society. And of course, we must find someone of the opposite gender to do all of this with. Any deviation from that norm is seen as abnormal and wrong. Unfortunately, there is an assumption that disabled people are exempt from this because we’re not worthy enough to date, get married or have kids. As a result, some disabled people may strive to prove that assumption wrong by doing exactly what is expected.

Those of us who are asexual and/or aromantic are often assumed to be that way because of our disabilities, which causes conflict in both groups. The truth is we are asexual and/or aromantic while also being disabled, and not because of it, and there shouldn’t be anything wrong with that. I’ve known for years I was asexual – I never had any interest in dating or anything. Aromantic was a word I learned more recently and also fit. There isn’t any particular reason why I am asexual and aromantic, I just am. 

Gender has always been something in the background for me, as being hard of hearing and dealing with that – and other issues – took up most of my focus. I had to navigate communication issues with everyone, almost all of the time. It’s not fun having to remind people that I am in fact hard of hearing, even with my hearing aids on. As a result I never really thought about it all that much, other than knowing I didn’t enjoy typical girl things. I didn’t like dolls or makeup or bright colors that girls are often expected to like. But it is also true that my parents never really made that much of a big deal about it. 

Within the last few years, I’ve really come to understand what being non-binary or agender means, and realized that it describes me. Agender probably fits best as I don’t really feel particularly drawn to any gender specifically. Having said that, I generally don’t mind female-gendered terms, with some exceptions. I don’t particularly like being called lady, as an example. On the flip side, I would much rather be called my parents’ daughter than child, because I’m an adult and the word “offspring” just sounds weird. But these are my own personal preferences – everyone else should be allowed to describe themselves on their own terms.
 
As I said at the beginning, I’m not surprised at the direction we’re going right now. And as I work out my gender and learn more about the trans/non-binary communities I see the same battles and the same struggle to be allowed to exist. I recently read the article “The fight against ableism mirrors the fight against transphobia” written by Ayman Eckford at PinkNews, which has a lot to say about what’s going on. Anyone who doesn’t fit the assumed norm is under attack right now by the current administration, and as always it’s about ableism: 

“Throughout history, ableism has been used against women to justify gender inequality, against Jewish people to justify the Holocaust, against people of colour to justify slavery and colonialism, and, of course, against the LGBTQ+ community.”

I am Jen Rohrig. I am hard of hearing, asexual, aromantic, agender and likely autistic. Proving the doubters wrong is the goal every day. Existing exactly as I am is the goal every day. I believe we all deserve to be able to be exactly who we are and exist as who we are, because we’re all human, with our various identities and differences.

Reading List

  • “Disability Visibility: First-Person Stories from the Twenty-First Century” edited by Alice Wong
  • “Being Seen: One Deafblind Woman’s Fight to End Ableism” by Elsa Sjunneson
  • “Black Disability Politics” by Sami Schalk
  • “The Future Is Disabled – Prophecies, Love Notes and Mourning Songs” by Leah Lakshmi Piepzna-Samarasinha
  • “Ace and Aro Journeys: A Guide to Embracing Your Asexual or Aromantic Identity” by The Ace and Aro Advocacy Project
  • “Gender: Your Guide: A Gender-Friendly Primer on What to Know, What to Say, and What to Do in the New Gender Culture” 2nd Edition by Lee Airton (make sure to get the 2024 edition)
  • “Ace: What Asexuality Reveals About Desire, Society, and the Meaning of Sex” by Angela Chen
  • “Refusing Compulsory Sexuality: A Black Asexual Lens on Our Sex-Obsessed Culture” by Sherronda J. Brown
  • “Ending the Pursuit: Asexuality, Aromanticism, and Agender Identity” by Michael Paramo

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.