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When Mothers of People with Down Syndrome Defend the “R” Word

Every so often, a mother to a child with Down syndrome writes a blog post explaining or defending their use of the “R” word for some reason or other. Sometimes the reason is a desire to get back to the dictionary definition of “slowing down,” other times it is because they believe their disabled child should be toughened up. Once a British mum wrote a post about how she mocks her son and calls him a ret*rd on a regular basis so he’s able to laugh at himself and not be hurt by strangers who use that word.

Usually, these moms present themselves as brave warriors, speaking out for common sense against the grain of overly sensitive, politically-correct, tender-snowflake mothers who will bash them. They may even play themselves as a victim or potential victim of backlash. Some may see themselves as engaging in a theoretical discussion by playing “devil’s advocate.” Every few months or so, there is a repetition of this phenomenon presented as a novel idea.

I tend to read these posts and their ensuing comments, under the misguided impression I will go back and argue with the points made and persuade people not to do this. The truth is, some arguments do not deserve the dignity of being refuted. I do not argue the finer points against using hate speech against racial, ethnic, or religious minorities, why should I spend my energy doing so for arguments in favor of using hate speech against people with developmental and cognitive disabilities? These arguments are ridiculous, and should not be validated in any way. I don’t argue with neo-nazis either. It’s not a debate– it’s a life or death matter. This isn’t a neutral term that can be discussed theoretically by people who are not threatened by the implications of it. It is not academic, it is not thoughtful, it is not engaging critical thinking– it is oppressive, harmful, and undermines the work self-advocates with Down syndrome and other disabilities are doing. It’s especially shameful given how difficult it is for people who are developmentally and cognitively disabled to be recognized, heard, or given a public platform.

“Ret*rd” and other hate speech against people with developmental and cognitive disabilities carries an implicit threat of violence. These are words that have historically been used to diagnose with the purpose of segregating and imprisoning disabled people where they became vulnerable to and victims of extreme physical and sexual violence, medical neglect, basic neglect, forced sterilization, and murder. Today, these words are used to continue to segregate and isolate disabled people where they become victims of harassment, restricted access to equal education, physical and sexual violence, murder, and extreme neglect. The words change from generation to generation (“idi*t,” “imb*cile,” “mor*n,” “cret*n,” “fe*ble-minded,” “ret*rded,” and most recently, “sp*cial,”) but the threat of violence and isolation remains the same. The institutions change, but the discrimination remains.

Disabled people, including and especially those with Down syndrome, have repeatedly asked that people stop using the word “ret*rd” and variations of it. They ask locally, giving talks at schools. They ask publicly, making PSAs, and giving speeches. This alone is reason enough that people should stop using it, and yet mothers of children with Down syndrome think it’s okay for them to speak over their children’s peers and community. This is unacceptable. Our children who have Down syndrome are ours, certainly, but they also belong to the disability community and their community of peers with Down syndrome. Out of basic decency, it should be a part of our parental praxis to connect them to their Down syndrome community, and to use the language and terms people with Down syndrome themselves find the most acceptable. Our job as parents of people with Down syndrome is to elevate their status by respecting them and their ideas and autonomy. We should be signal boosting their work, not undermining it.

With every generation, the hatred and discrimination against developmentally and cognitively disabled people turns a medical term into a euphemism, and then a dysphemism, and finally a slur. We have to keep shifting our language as medical terms for disabled people become hate slurs because the hatred of disabled people is not going away. The words’ meanings haven’t changed. The list of medical terms turned slur (“idi*t,” “imb*cile,” “mor*n,” “cret*n,” “fe*ble-minded,” “ret*rded,” and most recently, “sp*cial,”) are still used to essentially mean “ret*rd” in the derogatory sense because being seen as intellectually inferior is still about the worst way a person can be perceived in society. Moreover, it is used as a basis to deny people basic human rights, respect, and dignity.

It’s time all parents of disabled children prioritize combating the societal hate and exclusion of their children over their “right” to use hate speech casually because they feel close to the issue. The “dictionary definition” of “ret*rded” wasn’t something that was taken from you, it is a violence done to a group of people more vulnerable than you. It is not brave for nondisabled people to take this stance, just as it is not brave for white parents who adopt children of color to casually use racial epithets because of their “dictionary definition” or to teach their children that “words are just words.” Words are not just words. They are communication, and hate speech communicates violence. Let me repeat that for those in the back: hate speech communicates violence.

 

[Author’s note: I will not repost any of the articles I have seen defending the use of this word. They do not need to be given air time. I will give no platform to hate speech on my blog. I will, however, keep adding links to self-advocates talking about the “R” word as I find them.]

Disability Justice

Down Syndrome Superpowers

Recently, while I was giving a presentation on Down syndrome to a class of 7th graders, a student asked me, “Is there anything that people with Down syndrome are extra good at? Like, better than your average person?”

My mind raced through how to use the last 90 seconds of class time to answer in a way that was in line with both the social model of disability and the setting: science class. This wasn’t an intimate conversation with a friend where I could speak anecdotally or philosophically for half an hour about my thoughts on the subject. This was a good question that I wasn’t ready to answer.

Still, I knew somewhere in the back of my brain that I had read some convincing studies on Down syndrome and empathic behavior and I remembered some compelling thing I read about hypotonia (low muscle tone) and swimming once upon a time.

After I remarked on what a great question it was, I quickly replied that there was evidence that low muscle tone could be an advantage in learning to swim and that people with Down syndrome can have a remarkable capacity for expressing care for others, and adeptly navigating social encounters. I mentioned that I never knew how to gracefully exit a conversation with a new acquaintance at a party until a couple years ago when 13 year old girl with Down syndrome showed me how. The bell rang, and that was what went on the record for this class of 7th graders.

Of course, people with Down syndrome might be more likely to have characteristics and abilities that are valued in a world built for nondisabled people, just as we know it is likely for them to have characteristics that are devalued. It gets murky for me here, though. I refuse to try to come up with ways to pander to nondisabled or neurotypical people to make them see people with Down syndrome as more human or deserving of life and inclusion because people with Down syndrome have characteristics that are valued in an ableist society.

There are studies that have shown that people with Down syndrome look at the faces of people in distress for longer, and show more caring and comforting behaviors to those in distress. There is a difference between this and empathy, however, because the same study shows they may be less likely to take on or even label the emotions of others, which is not necessarily a bad thing at all. There are also studies that show that people with Down syndrome may have an increased capacity for perceiving certain moods based on facial expression. Those with Down syndrome may smile more than a person without Down syndrome (Fidler et al, 2005).

We don’t get to assume those are superpowers carried on the 21st chromosome, however, because the question hasn’t yet been thoroughly asked in response to these findings: Is this a survival strategy? Living in a world that is incredibly hostile and exclusionary to disabled people, particularly cognitively and developmentally disabled people– have folks with Down syndrome learned how to interact socially in such a way as to keep themselves safer? Is the ability to perceive moods developed because reading behavior is important to predicting an unsafe situation? Does frequent smiling encourage nondisabled people to be kinder and more inclusive to individuals with Down syndrome? I wish we knew more about the answers to these questions. I wish our society wanted to know the answers to these questions badly enough that there was funding to study them. Most importantly, I hope that it is people with Down syndrome themselves who get to report back on this.

Asking the question, “Is there anything people with Down syndrome are better at because they have 3 21st chromosomes?” opens up the door to more questions than it will ever have answers for. Is it important? Will this information be used to further objectify people with Down syndrome? Will we only view people with Down syndrome as worthy of life if they have something extra to contribute? What about people with Down syndrome who do not exhibit those traits, will they then be seen as tragic (or more tragic)? Will this be used to put other people with developmental disabilities down, such as research that is used to distinguish those with Williams syndrome from their developmentally disabled peers as more friendly and musically inclined, and the so-called Down syndrome advantage? Will this increase the tendency to generalize people with Down syndrome and continue to reduce them to a set of predictable behaviors and abilities? Will it perpetuate stereotypes of people with Down syndrome as “angels?”

People with Down syndrome have plenty to be proud of, and shouldn’t need a disability superpower to grant them higher status or further a movement for their rights. They shouldn’t need to smile more, be more charming, show more caring behavior, or anything else to be considered valuable. How can we ask this question and avoid these pitfalls until we have truly dismantled our ableist culture? I don’t know that we can. I came to this blog post to ask questions today, not answer them. I do know that all disabled people are deserving of life, love, appreciation, and inclusion, whether their or not disability gives them a “superpower,” whether they are pleasant to be around by nondisabled standards or not.

I wish I lived in a world where we weren’t asking these questions to assign value to people or try to counter eugenic practices. I wish we got to ask as curiously as that charming 7th grader did.

Disability Justice

It’s Time to Retire “Able-Bodied”

As folks become more aware of ableism, there are listicles and blog posts galore explaining what ableism is, how we do it unconsciously, how to avoid being ableist, how to make spaces more accessible, and so on. This is a great trend in social and indie media that should continue! Unfortunately, all too many, even those by disabled people, use the inaccurate and problematic term “able-bodied.”

The thing is, “able-bodied” erases and others cognitive*, developmental, neurological, and psychiatric disabilities. It plays into the my-mind-is-fine trope and reinforces the medical model of disability. What does “able-bodied” even mean? Which abilities count? Aren’t all bodies able to do a thing or two?

When people use “able-bodied,” to refer to nondisabled people, it separates those with cognitive disabilities from people with physical disabilities as if the two truly were separate– as if the mind weren’t a part of the body. This implies that the mind has a higher status than the body, rather than a place within the body. These concepts, while abstract, subtly reinforce belief-systems that value intelligence, and devalue the lives of people whose disabilities affect their ability to perform intelligence in an ableist and inaccessible world.

“Able-bodied” separates physical from cognitive, developmental, neurological, and psychiatric disability, it sends a message that disabled people are split between those whose “minds are fine” and are therefore deserving of respect, while implying those whose minds aren’t fine are not deserving of the same respect and accommodation or inclusion. Further, it ignores that many people have physical and cognitive, developmental, neurological, or psychiatric disabilities.

Perhaps the most insidious thing that the term “able-bodied” does, is reinforce the medical model by implying that ability lies inside bodies rather than inside the social structure. It directly refutes the social model of disability, which says, in the words of the late and fabulous Stella Young, “that we are more disabled by the society that we live in than by our bodies and our diagnoses.” Meaning that all the abilities in all the bodies and minds are valuable and important, but the world is structured to enable some, while disabling others. As disability activists, self-advocates, and allies seek to show the world a new lens with which to view disability, i.e. the social model, they are undermining it every time they use “able-bodied” when they are describing people who are enabled by the ableist structure of society.

What does “able” really mean in the context of “able-bodied?” It implies that there is a specific set of abilities a body must have in order to be considered to have ability at all. How can we reconcile that with a movement for disability justice that values all abilities, all bodies, and all minds? We can’t– “able-bodied” is simply incorrect and far too loaded to continue using.

Circling back to using the lens of the social model of disability, we can distinguish people who are disabled from those who are not by using the terms “abled” or “enabled,” as in, enabled by the structure and culture of society. We can also center disability in our conversations by using the term “nondisabled.” Some people prefer to use the term “temporarily (en)abled” in order to highlight the reality that being nondisabled in an ableist society isn’t a guaranteed permanent status.

Our words carry lots of information beyond simple definitions. As we push for a more accessible and inclusive world, we should choose our words wisely. It’s time to leave this phrase behind us and incorporate the social model of disability into our language and ideas at every level.

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*I prefer to use the term “cognitive disability” over “intellectual disability” because “intellectual disability” is a determination based on IQ, a debunked theory about how the brain works. “Intellectual disability” reinforces the belief that IQ is meaningful, when in truth it tells us nothing about a person’s abilities or ways of using their cognition. “Cognition,” on the other hand, is a word for the ways in which a brain stores, recalls, processes, and expresses information. That’s much more useful and accurate.

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Requests for Parent Contributors to Raising Up Down Syndrome the book!

My name is Lauren Smith-Donohoe, I’m a disabled mother of 2 with one on the way. I’m writing a book about caring for a young child with Down syndrome, focusing on ages 0-3. I’m looking for a handful of parents to contribute their analysis, tips, anecdotes, and parenting wisdom to this project.

The lens the book is looking through is the social model of disability– that it is barriers to access and inclusion that are truly disabling, and that disability is a natural part of the human condition and diversity. Additionally, I am a long time activist with a background in explicitly anti-racist, feminist, anti-authoritarian, and non-hierarchical organizing: these principles are a guiding force of the project.

I am looking for parents of children and adults with Down syndrome who have a strong foundation in disability rights, as well as anti-racist analysis and praxis, to consider participating. Following in the disability rights tradition of “nothing about us without us,” volunteers who are Black, POC, LGBTQIA, disabled, immigrant, and otherwise intersectional, are a crucial part of making this all that it could be. I will also be interviewing teens and adults with Down syndrome to include their perspective on key issues, for example, what Down syndrome is and isn’t, and perspectives on therapy and intervention.

Rather than solicit a large number of anonymous anecdotes from parents, I would prefer to have a handful of parents with different experiences and ideas to contribute on multiple topics throughout the book. This is to ensure better representation and a spectrum of experiences. I can’t pay for contributions; the reality is that I probably won’t make much money off the book (unless it becomes a bestseller [;D] in which case I will revisit this with all contributors on principle and negotiate a fair amount). Despite lack of funding, I think it is still worth participating. I do believe in fair compensation for work, but I do not have the means on my own, and working with a small, indie publisher, I will not be getting an advance. This is a labor of love for me and would be for you too. All contributions will be minimally edited (only for clarity, space, technical issues) and all edits would be approved by contributors directly. Each will have a bio, and get full credit for their words.

The publisher I’m working with is Autonomous Press, a local publisher founded by disabled people who publish fiction and nonfiction about disability issues by disabled authors. I am already working on the book with a mentor-editor.

There are probably 10-12 chapters that I’d be looking for thoughts on, and a contribution could range from a short paragraph of a few sentences to a short essay, depending on how personally moving or provoking the subject matter. Not all subject matter is overtly political. Some will, of course, be practical, such as feeding, sleeping, finding the right access equipment, and so on.

Do you think you’d be interested? Please send an email to lesmith.donohoe@gmail.com with the following info:

-Your first and last name

-The age of your child with Down syndrome (if your child is still under 3, I would still encourage you to participate if you are interested!)

-Whatever demographic information about yourself that you think is relevant (here are some suggestions: race, ethnicity, religious background, class background, relationship with the gender spectrum, if you are LGBTQIA, have a disability, are an immigrant, are a single parent, and so on)

-A short description of your perspective on Down syndrome, disability, and social justice.

-Anything else that you think makes your perspective unique (not required!)

-And any questions you have for me! (And any concerns you have about this book- I am listening)

Please feel free to share this with other parents of people with Down syndrome that you think would be interested in participating. Thank you!