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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.]

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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!