Category: Disability Justice

Autism, Disability Justice, Down syndrome, Parenting, Therapy

Regarding Applied Behavioral Analysis (ABA) Therapy

Lauren Smith-Donohoe

I have been reluctant to write anything about ABA. Often times when I talk about my position, I am accused of being “judgy” or “mean” to other parents. More importantly, people who have experienced ABA, practiced it themselves, and then chosen to stop have already written and created such excellent pieces about it that it felt like I’d be echoing them for my own benefit.
Every couple months, a friend or acquaintance privately reaches out to ask me about ABA and why I say such negative things about it on social media. Often times their child is in ABA therapy and seems to be playing and having fun, so how harmful could it be anyway? Rather than recreating that conversation over and over and re-living the fear of being friend-dumped each time, I want to lay out what it is I find so abhorrent about Applied Behavioral Analysis “therapy” so that I can point to it the next time someone asks. Friend-dump me quietly, if you must.
I try really hard to remain diplomatic about issues of disability justice– not because I have to or even because I should but in the hopes that because I usually have the capacity to, it may be better received. This piece is not particularly diplomatic. For a much more diplomatic post on this subject, please visit Unstrange Mind. For a calm and reasoned takedown, please see Michelle Dawson’s piece entitled, The Misbehavior of Behaviorists: Ethical Challenges to the Autism-ABA Industry.
There was recently an article on HuffPost entitled, “I Don’t Know How to Explain To You That You Should Care About Other People,” and when it comes to ABA sometimes I feel like saying, “I don’t know how to explain to you that training children like dogs is wrong.” I realize how off-putting that probably sounds, but it’s my initial reaction every time I am asked about why I have a negative view of ABA.
The principle behind Applied Behavioral Analysis (ABA) therapy is that you can train a person by using positive and negative reinforcement. There are a lot of ways to put an academic shine on that, but O. Ivar Lovaas, the founder of ABA, once wrote:

“With responsibility, the developmentally disabled individual takes on dignity and acquires certain basic rights as a person. No one has the right to be taken care of, no matter how ret*rded he is. So, put your child to work; his work is to learn.”
Wow. Let’s unpack that for a moment. Developmentally disabled individuals do not have dignity or basic human rights until they perform to a certain standard. Further, they do not intrinsically have the right to be taken care of. (Side note: please check out Interdependence theory!) This is a part of the underlying philosophy associated with this practice. Disabled people need to earn their right to exist by performing less disabled, and ABA will train them to perform as a less disabled person. At its core, ABA is rooted in the hatred and denial of the humanity of disabled people. Even with the most generous interpretation, it is about pathologizing and rejecting disabled ways of being and holding up non-disabled ways of being as the only right way and the only way to be correctly human.
It doesn’t matter that it may seem like fun, it doesn’t matter that your “Behavior Technician” seems like a really nice person. It doesn’t matter that you read a study that ABA “works,” because what it “works” at is wrong. It is compliance training at its core.
Of all the demographics, one of the groups most at risk of experiencing physical, sexual, emotional, verbal, institutional, financial, and educational abuse is the demographic of people with developmental disabilities. You can double, triple, and quadruple those risks according to how many other marginalized groups they fall in.
In their piece “I Abused Children for a Living,” a former ABA therapist writes, “The ‘evidence’ that they love to cite is based on torture. Would you comply with demands if tortured enough? Probably. Does that make it effective? Well, I guess that depends on what your goals are. If your goal is to gain compliance (which is the goal of ABA) then yeah I guess it’s effective at that goal, but that’s a pretty shitty goal to have, and at what cost?”
Even if we stop here, this alone makes ABA enabling of abuse against people with developmental disabilities because training compliance facilitates abuse. Yes, even compliance about putting toys away and yes, even compliance with not banging your head on the wall and yes, compliance about looking into your mother’s face when she talks. Teaching people to listen without question is grooming them for abuse, and grooming is itself abuse.
Our culture has a way of seeing words like “racist” or “abuse” as insults rather than objective realities and therefore separating them from the regular, everyday people who harm others and making it seem as if only villains in masks (hoods?) and obvious monsters can be perpetrators. That cultural practice isn’t a reflection of reality. Some things are objectively harmful and need to be recognized as such. ABA, no matter how normalized, is one of those things, and calling out injustices for what they are is a crucial part of the road to justice.
ABA uses “rewards” and “aversives” to manipulate behavior, which can remove intrinsic motivation including for learning and socializing. The lack of a reward is itself a punishment, as is the requirement to perform a task that may be painful, scary, or otherwise unbearable in order to receive it. Author and educator Alfie Kohn has written extensively about how rewards and punishments are harmful to children and promoted the concept of “Unconditional Parenting,” saying, “How we feel about our kids isn’t as important as how they experience those feelings and how they regard the way we treat them.”
Parents and therapists often use an ends-justify-the-means approach to therapy for their disabled children, believing that acquiring skills is the most important thing and that it is worth the child having negative experiences if it means that they will have a “better life.” In this context, what is considered better is what is most “normal,” or non-disabled. Survivors of ABA have come forward to say that they have Post Traumatic Stress Disorder (PTSD) and Complex-PTSD (C-PTSD) as a result of their experiences in ABA. This is not an acceptable trade-off. Suicide is dramatically shortening the life-expectancy of autistic people and autistic people are saying it is because they are not being accepted.
Autistic writer Max Sparrow, “All those years of ABA therapy will have taught them that they are fundamentally wrong and broken; that they are required to do everything authority demands of them (whether it’s right or wrong for them); that they are always the one at fault when anything social goes wrong; that they get love, praise, and their basic survival needs met so long as they can hide any trace of autism from others; that what they want doesn’t matter.”
People often say that their child has fun at ABA therapy, or that “their” ABA isn’t “like that.” Insurance and Medicaid cover ABA and not play therapy and no doubt there are therapists using other types of therapy and billing for ABA. The problem is that this perpetuates the myth that ABA is acceptable and helpful, so it really doesn’t help anyone. Similarly to how ABA sacrifices long-term mental health for short-term compliance goals, insurance fraud gives a small group of kids a better experience at the expense of the long-term realities for all children with developmental disabilities.
With the coverage of up to 40 hours a week of therapy for a growing number of children, ABA has become a cash cow for what I not-so-affectionately call the Disability Industrial Complex. (Anyone whose child has ever needed medical equipment or therapy knows exactly what I mean. $3500 for a stroller???) ABA vendors are raking it in, and even with more and more kids being diagnosed with autism, they are looking for other demographics to target. Enter children with Down syndrome. The latest and most certainly NOT great trend in Down syndrome parenting is ABA therapy. This is not about supporting people with Down syndrome, it’s about using them to make more money by preying on parents’ fears.

“ABA has a predatory approach to parents. The message is that ‘if you don’t work with an ABA provider, your child has no hope,” says Ari Ne’eman president of the Autism Self-Advocacy Network. This message is now being sold to parents of children with Down syndrome, particularly under the guise that it will help them behave in such a way as to be more successfully included in school. The onus for inclusion is on the district, the school, the faculty, and the other families– it should never be on the disabled child. Children with Down syndrome have a right to be included unconditionally and all of the time.
Parents believe ABA will give their child an advantage in a world that is unaccepting because of a reasonable fear for their children. Another former ABA therapist writes, “I thought that because I cared about the kids’ well-being, because I had a strong desire to help them, everything I did must therefore be in their best interest. In my mind, it gave me a special immunity to making mistakes. Caring meant there was no way I could be hurting them. I now realize how dangerous this idea really is. I’ve hurt many people I care deeply about. Just because you care about someone or have good intentions does not guarantee you’re doing the best thing for them.”
For all the material created by adult autistics about their experiences, we have a tiny fraction of that amount from people with Down syndrome reflecting on their own experiences and none that I know of is related to the therapies they’ve done. We need to be asking ourselves the tough questions as parents of disabled children: What is my child’s experience of this intervention? What is the long-term lesson of this intervention? What else is being learned with this intervention? Just because parents have good intentions for their child does not mean they are not harming them.
I want to be able to ask people, “Would you do this with your typically developing child?” but our culture is so manipulative of children, and so demanding that their behavior mold itself to our convenience. We use sticker charts and timeouts and take away devices to cajole and force our kids to bend to our convenience and schedule. Behaviorism is an entrenched part of our culture, but not a necessary part. ABA and ABA-inspired practices might seem normal to people in part because our mainstream child-rearing practices carry similar underlying principles– that children are lesser and should be subservient to earn their place.

Amy Sequenzia writes, “I had some ABA when I was young, and I ‘flunked.’ I want to say, I am proud of this ‘F’ in my life. Of course, the ‘experts’ explanation for having failed to make me into a ‘tidy,’ appropriate,’ ‘good girl,’ obedient and compliant Autistic was my severe impairment, my extreme low IQ, my inability to learn or, as Lovaas would probably have said (and something a doctor actually said), my lack of human dignity. I prefer my own assessment: if you want something from me, if you want me to do something, respect who I am, respect my way of doing things, listen to me and allow me to disagree and to find my own way. ABA rejects all of this and that’s why I failed it.”
As a parent, I have been asked for almost 16 years now how I get my child(ren) to comply without forcing, rewarding, or disciplining them*. I don’t really know how to explain to people that children are deserving of the same level of respect and autonomy as everyone else from birth, but I do know that it’s true. I don’t know how to explain that children with disabilities have the same rights and feelings as every other person, but I know that’s true too.
“We can best help children learn, not by deciding what we think they should learn and thinking of ingenious ways to teach it to them, but by making the world, as far as we can, accessible to them, paying serious attention to what they do, answering their questions — if they have any — and helping them explore the things they are most interested in.”–John Holt

*I’m still learning and trying and growing and messing up, that’s how!

Disability Justice, Parenting

Enclosed Bay Area Parks

Lauren Smith-Donohoe

There are so many reasons parents like to take their kids to enclosed parks. Once you find one with a gate, you can end up playing it out since it’s the only place you’re pretty sure you won’t lose a kid.

This document-in-progress is as much information as I have yet compiled about enclosed Bay Area parks and playgrounds. I will keep updating it as we visit parks and friends send in tips. Please leave any tips in the comments here, or use the comment feature to add information to the document. I will update it as soon as I can. I’m so grateful for the collaboration and feedback!

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Book Reviews, Disability Justice, Down syndrome, Parenting

Book Review: Not Always Happy by Kari Wagner-Peck

Lauren Smith-Donohoe

I have been meaning to post a review for Not Always Happy, An Unusual Parenting Journey, by Kari Wagner-Peck for a few months now. I read it in two sittings back in late May, just before my newest child came earthside. It’s probably for the best that it took me so long, as I have since had lots of time to think about it and discuss it with friends who have also read it. I am going to refer to KWP as ‘Kari’ throughout because we are friends on social media and it would be weird to refer to her as ‘Wagner-Peck’– I tried it, it was weird, I edited it. Warning: I personally like to know what I’m getting into and appreciate spoilers. If you do not, beware, as there are spoilers ahead!

Not Always Happy reads in the style of Kari’s blog, A Typical Son, which I do not keep up with regularly, but I do read whenever I am reminded of a new post. It’s like sitting over a cup of coffee with a mom friend and letting her narrate the story of her life without interrupting, parenthetical jabs at villains and all. It’s a smooth and easy to read story telling, making it a very accessible read in a number of ways. Kari creates colorful characters of the people in her life, but the most vibrant character is her son, Thorin. Her blunt and honest portrayal of her own emotional process, from fostering to adopting Thorin, then again as he transitions from Early Intervention to school and from school to unschool creates an intimacy between her and her reader– I was compelled to send a message to her in the middle of the night to thank her for a passage that left me in tears. Just as she sees her son, so I see mine, in a world where no one seems to get it, even other parents of children with Down syndrome sometimes.

As Kari writes about the process of fostering a child (Thorin) who is not yet up for adoption because of a hearing postponement, with the desire and plan to adopt him, she opens up about her somewhat secret wish that family reunification won’t work in his case. I’ll be honest, it was uncomfortable for me to read and process this because I feel very strongly that the focus of fostering should be to support family reunification whenever possible. Kari acknowledges this in the book as well. Mothers who have survived or are surviving abuse, are lacking mental health supports, mothers who are disabled, mothers living in poverty– these are the mothers who are too often revictimized by family courts and social workers, and their children suffer too. My heart wrenched for Kari and her husband, Ward, as much as it did for Thorin’s biological mother, even understanding that a terrible failure in parenting led Thorin to be placed in protective care. As ever, it was most likely a series of failures, some that his biological mother was the victim of, and some she perpetrated. It’s never simple, so I went ahead and felt all the different ways a person could to make sure I covered the bases. I already knew the end of the story– that Thorin is a thriving kid living a great life with parents who truly seem to understand him, but it did not stop me from feeling suspense at the constant uncertainty they faced.

As I sat on the edge of my glider feeling suspense about the adoption, my stomach twisted thinking of Thorin’s biological mom. Has she read this book? Will she? Will her heart break? Will she fall in love with him in a new way through Kari’s eyes? Will she resent or feel ashamed at the story being told? How will this notoriety affect her? What is her story? When Thorin reads this book, how will he think of his biological mother? I am thankful that the most vulnerable parts of this story are kept from me. They are Thorin’s to tell, or not, in his own time and way, and I’m glad Kari believes that too. There is a discomfort in not knowing the details, but I think it was handled as best it possibly could.

As I read about Kari falling in love with Thorin, I connected deeply to the anecdotes she shared, from bath time to eating snacks in the grocery store together. I have always felt that as a mother I am in a constant state of falling in love with my children and the seemingly new people they are as they hit each new stage of development. I did not expect that experience to so seamlessly blend with Kari’s descriptions of falling in love with toddler-Thorin for the first time, but it did, perhaps especially because my son with Down syndrome was the same age in real time as Thorin was in the beginning of the book, and they share a number of charming characteristics. For weeks after reading, each time my son answered me with a definitive “yiss,” I heard imaginary toddler-Thorin in my head affirm, “yessith!”

A superpower I have developed since my first son was born, is the ability to read the faces of people we pass on the street and determine whether or not I hate them based on their reaction to seeing his face. The handful of times I have been in public without him, I have searched the faces of passers by just as intently, and found that the reactions he and I get are dramatically different than those I get when I am alone, with my teenage daughter, or with my other son who does not have Down syndrome. I feel vindicated that my excursions without him prove I’m not imagining it, but also heartbroken. In Not Always Happy, Kari writes, “I knew it had to do with Down syndrome somehow because in our short time with Thorin most things people did that were rude or offensive had to do with Down syndrome.” Yes. Add to the list the weird and awkward things people do as well. As Kari describes her early experiences with people’s strange ideas and outright discrimination, I nodded along, having shared similar experiences, thankful for the validation.

One of the coolest characters Kari introduces is Jade, Thorin’s fiercely protective older sister who is also living in foster care. Jade has the cynicism of a hardened New Yorker, and the fearlessness of someone who has already walked through the fire. Jade tells Kari she often gets called brave by adults when they hear how she went on her own to find help for herself and her baby brother; her courage in demanding quality care from adults for Thorin is even more impressive. She maintains a presence in his life and doesn’t hold back when it comes to his well-being. Jade has so many of the characteristics I love in my own children, and ones I hope they are able to learn without walking through the fire too. I love the way Kari writes about her with the respect she deserves and has earned. It’s one of the many ways the respect she has for children shines in her writing.

The majority of the book is dedicated to the trials and tribulations of navigating Early Intervention (EI) and transitioning into public schooling. Their story is so familiar I think I might have been able to guess many of the brick walls they’d hit along the way, and yet the storytelling is fresh and compelling. From the outset of their journey as new parents, Kari and Ward find that they expect Thorin to receive what he needs and be treated as, you know, a regular person, but every person they interact with in the different systems disabled children are shuffled through patronizingly shuts them down. In EI they are in a fight from the get-go for services that will help Thorin in preschool, such as physical therapy; once he is in preschool, they are in an uphill battle with an outdated, exclusionary, and prejudiced structure– not to mention therapists and teachers who range from overly “helpful” to downright abusive. I am navigating these systems myself, and seeing further evidence that the problems my family and I face are everywhere is both vindicating and enraging. Kari’s style of writing interjects much needed derisive humor– I hope to channel her as my inner voice the next time I’m sitting in an IEP or 504 meeting.

As Thorin moves into public school he is fighting for his place and his parents are alongside him fighting every which way for him to be treated as equal to his peers and given the supports needed to do well. Again, this story will be predictable to parents of disabled kids who have tried to work within the public school system. Kari stops at nothing to advocate for Thorin. She takes risks I find relatable, unafraid to send what I sometimes refer to as the “bad idea email.” It’s the one that goes out in the middle of the night when all your feelings are stewing together in a mish mash of fear, anger, frustration, powerlessness, and a fierce protectiveness. Ultimately, Kari and Ward choose to leave the public school system and transition to unschooling (my personal favorite style of homeschooling)

I already knew the end there, too, because I came to know of Not Always Happy by reading Kari’s media contributions, social media, and blog posts after Thorin had begun unschooling. I wish she had spent more time writing about unschooling and their experience of it, as I think parents of children with Down syndrome who are as fierce as she and I might be afraid of it and feel that it is a disservice. In reality, I think unschooling has the potential to foster immense creativity, knowledge, and especially autonomy, something disabled children are so often robbed of, starting in EI and compounding through school. I love seeing snippets of what unschooling looks like in their family, and I think it would be worth sharing with a wider audience.

My biggest concerns, as ever, with writing about disabled children have to do with their privacy, dignity, and right to tell their own story. I can be very critical of the way people choose to share about their lives raising a disabled child or children. At a minimum, I believe parents should write in such a way that when their children are grown, they will read it and feel tremendously loved, respected, and valued. They should look at our body of work and feel proud of what we have done. I recently wrote a draft of a chapter for the book I am working on that advocates, amongst other things, waiting to share stories publicly until our children are adults and can be a part of the process in a more directive way. Just because a 10 year says it’s okay to share an anecdote doesn’t mean that same kid won’t be mortified people know it in 5 more years. Sharing our children’s stories comes with great responsibility. In sharing their stories, people they have never met feel a sense of intimacy with them. What are the repercussions of that?

I came to this book already respecting Kari a quite a bit for the way she writes about Thorin and their lives together. I think she really toes the line of giving her reader access to their family and protecting Thorin’s story, (although he may disagree about the potty training bit in a few years). What is striking and notable about both the book and her other writing, is that it is clear that she has a deep understanding of and respect for Thorin as a person. She sees him when others don’t. I expect that when he is grown he will read these words and feel affirmed, he will feel her love and confidence in him rather than feel embarrassment or that he has been a burden.

The most important thing this book does is give a template to parents of children with Down syndrome, or any disability really, to truly see their child, and see them as equal. It’s a huge gift she is handing to us in her writing, and I believe it is worth the risks she takes to tell these stories intimately and urgently. I cannot impress enough how powerful this aspect of the book is. Further, it can help people who don’t have a close relationship with anyone who has Down syndrome have a chance to look through that lens themselves.

Don’t mistake this for your run-of-the-mill mommy blog monetizer or yet another story of an angel martyr mother to a burdensome disabled child. Not Always Happy is a beautiful act of solidarity with other parents and their children with Down syndrome, and a powerful work of advocacy. 

Autism, Disability Justice

We Need to Start Recognizing Ableism as the Serious Issue It Is|Guest Post

Lauren Smith-Donohoe

Guest post by Persephone Smith-Donohoe, 14 year old disability advocate, musician, martial artist, dancer, and big sister. This essay was originally written as an 8th grade assignment and was voted Best Presentation by Persephone’s classmates and went on to become an inspiring speech presented to students and teachers.

     On November 3rd, 2014, Jillian McCabe took her 6 year old son, London, to get ice cream. After, she took him to the middle of the Yaquina Bay Bridge. She picked him up, then put him back down again. Then, she picked him back up, said “sorry,” and threw him over the bridge. She walked back to her car, called 911 and admitted to killing London. Journal entries conclude that she had been planning the murder for weeks. The reason she did it: because she felt burdened by having to take care of an autistic child. Many people defended  her saying “well she was put under so much stress taking care of a child with ‘special needs.’” September 20th, 2016, North Carolina, Keith Lamont Scott was a black disabled man who was sitting in his car, reading while waiting for his son to come home when he was shot and killed by the police. The officer who shot him faced no charges. Joseph Nathaniel Weber was a non-speaking autistic man who was confused and scared as he tried to find protection in a home for disabled people when he was shot and killed by Kansas police on sight. Mitchell Wilson, age 11, was bullied for having muscular dystrophy to the point where he suffocated himself to death. Disabled people’s lives are not valued in our society. Many parents have beaten and murdered their children for the sole reason that they are disabled. And nearly half of the people killed by the police in the U.S. are disabled. Disabled people are constantly persecuted and discriminated against every day. Our history is filled with the bloodshed of our disabled ancestors. Their stories of oppression and mistreatment have been overlooked and ignored. Our everyday language is packed with slurs against people with disabilities, and the media continues to perpetuate it. We need to start recognizing ableism as the serious issue that it is.

Ableism is not a new or uncommon thing. It has been happening throughout all of history, but still we overlook the suffering of disabled people. Just by living in 2017, you probably know at least a little bit about racism, sexism, homophobia, and other oppressed minorities, but the majority of people have never even heard of ableism. Ableism is the discrimination against disabled people and though it’s overwhelmingly common, it goes unrecognized constantly. More than 7 out of 10 people with disabilities report being abused and yet still people pretend like it doesn’t exist. Disabled people aren’t getting support or help because we aren’t giving them the safe space to do so. Because when they do speak out, we shut them down and belittle them. But they’re probably just making it up or exaggerating because they’re ¨retarded,¨ right? During the Holocaust, Hitler made the T4 program which made it so that people with disabilities would be murdered because he wanted the “master race.” The T4 program ended up killing approximately 275,000 people with disabilities. This program was inspired by the American Eugenics Movement, which had the same idea of killing disabled people to “eliminate” any traits they perceived as “negative” from the human race. Even now scientists are trying to make technology to “fix” disabilities before the child is even born. Businesses are legally allowed to pay their disabled employees just pennies an hour and Goodwill takes advantage of this law all of the time. We can’t keep our backs turned to this injustice anymore. The longer we continue to ignore and silence the disabled community, the worse ableism will become, and the more innocent people will be harmed and killed.

Throughout this history, our language has become loaded with derogatory words and phrases that target disabled people. The English language has hundreds of ableist slurs that are used every day by ignorant people who know nothing of the harm they are inflicting on the disabled community. When people find out that their words are discriminatory, they are defensive and continue to say the words after they know its true meaning. Because of this, many disabled people are hurt for trying to stand up to oppression.  A lot of the word’s meanings have changed as well, which leads people to believe it’s okay to use them as slurs. It’s not. “Mental retardation” used to be considered the preferred term when referring to intellectual disabilities. The term translates from Latin to  “slow,” so it was used in the medical field to mean that the disabled person would meet their milestones at a slower pace. However, this word stopped being the medical term when people started using it as a slur. Similarly to the R-word, words like dumb and lame were used differently as well. Dumb means unable to speak and lame means unable to walk. Individuals with Down syndrome, a genetic difference caused by the appearance of a third 21st chromosome, would be diagnosed as a “Mongoloid Idiots.” “Duh” was used to mock the way people with low muscle tone talk. Words like “imbecile,” “moron,” “spaz,” “derp,” “cretin,” and “feeble-minded” have similar histories.  By using these words casually, it diminishes its history and causes pain to those around you who might have been or known someone who would have been considered “mentally retarded” or any of the other words listed.

The media is also to blame for the widespread acceptance of ableism. Many media outlets perpetuate ableism by using ableist language, turning disabled people into comedy and using disabled people as inspiration or plot devices. Most TV shows and movies have that one character that’s a little different from the others and generally the butt of many jokes. Some examples are Patrick from Spongebob, Stimpy from Ren and Stimpy, Karen from mean girls, and many other characters portrayed as “stupid” for comedic effect. Some characters have specific disabilities are made fun of throughout the film for entertainment. Take Gerald the seal from Finding Dory as an example. Then there are the characters that have physical disabilities who are “overcoming” or are turned into villains with a grudge against the person who caused their disability. Many TV shows and movies do a good job portraying disabled characters, but then use them as a plot device to help the main character grow and have no relevance after that. Nearly all movies and TV shows use ableist language as well. Legally Blond, Clueless, That 70s Show, The Wolf of Wall Street, and many more all use the R-word in negative ways. Even in the news, disabled people are almost always used as inspiration or as the object of pity. When people are constantly exposed to this type of discrimination, it’s hard not to adapt to it and start using the same language and laughing when someone does something “stupid.” Society has etched into our brains that being smart is good and being “stupid” is bad. That our IQ determines our self-worth. But being able to recreate patterns with blocks and do a certain amount of math problems in 30 minutes doesn’t say anything about your creativity, your ability to empathize, or your determination in things you love. We need to get rid of this ridiculous idea that not being society’s version of “smart” makes you a less deserving of a happy life. The next time you laugh because someone does something you perceive as “stupid,” ask yourself, “why do I find this funny? Is this idea rooted from society’s ableists beliefs?” And the next time you call someone “stupid” think to yourself “why is it a bad thing to not meet society’s expectation of intellect?” I challenge you to change your mindset and ideology around what it means to be “smart” or “stupid.” We can’t continue to let the media control the way we perceive disability.

Ableism is a very real, very serious issue that needs more recognition. Disabled people are mocked, beaten, and murdered every day. The list of disabled people killed by their parents and caregivers in the past 10 years is so long, it would take nearly 45 minutes to say all of their names. Not only have parents betrayed and hurt their children, but police brutality has taken many disabled lives as well. Our society has trained us to believe this is okay. Our language has given us the weapons to inflict pain upon the disabled community. Our history is haunted by the cries of disabled children who have been left in the streets to die. We can’t just sit and watch this discrimination anymore. We need to stand with the disabled people in our communities. The current events in America are scary for all oppressed groups, including disabled people. Our new president does not care about the rights of disabled people. He will not try to protect their rights and he will not try to protect their lives. We can’t let our government steal the rights of our friends and family with disabilities. We must take a stand against the oppression and bigotry disabled people are subjected to day after day. We must work to grow as a society that’s accepting of all people! All races, all genders, all religions, all sexualities and all abilities! And we must never fail to recognize the pain of another oppressed group again!

 

Works Cited

“Ableism/Language.” Autistic Hoya. N.p., n.d. Web. 08 Mar. 2017.

Agorist, Matt. “Cops Kill Speech Impaired Autistic Man Trying to Find Safety in Home for People with Disabilities.” The Free Thought Project. The Free Thought Project, 24 Aug. 2016. Web. 9 Mar. 2017.

“Crime Against Persons with Disabilities, 2009-2012.” Bureau of Justice Statistics (BJS). N.p., n.d.      Web. 08 Mar. 2017.

Everton Bailey Jr. | The Oregonian/OregonLive. “‘Sorry,’ Mom Said as She Threw Son off Oregon Bridge after Weeks of Planning His Death.” OregonLive.com. N.p., 23 Feb. 2016. Web. 08 Mar. 2017.

O’Hara, Mary. “Up to Half of People Killed by US Police Are Disabled.” Mary O’Hara: Lesson from America. Guardian News and Media, 29 Mar. 2016. Web. 08 Mar. 2017.

“People with Disabilities.” United States Holocaust Memorial Museum. United States Holocaust Memorial Museum, n.d. Web. 08 Mar. 2017.

“Retard.” Dictionary.com. Dictionary.com, n.d. Web. 08 Mar. 2017.

“Survey Finds Disability Abuse Widespread.” Disability Scoop. N.p., 10 Sept. 2013. Web. 01 Mar. 2017.

 

Disability Justice, Down syndrome, Parenting

T21 and Competitive Parenting

Lauren Smith-Donohoe

I was a parent for close to 13 years before I remember experiencing the passive aggression of competitive parenting. I had my first child very young and had a handful of first-time mom friends who were also young. We had conflicts, of course, but I can’t remember us ever pitting our similarly aged children against each other. My daughter occasionally experienced a spontaneous math test or interrogation of what exactly we did all day when she was homeschooled, but never from our friends.

Once I had my second child and was introduced to the Down syndrome community, I knew that social relationships with other parents would be really different, and they are. We lost some old friends; we got closer to some old friends. We made lots of new friends. We now maintain friendships with folks whose politics and personal beliefs are far different from ours and those of our long time friends. We have ongoing friendships with people way outside our class demographics as well. These types of friendships often don’t last without some kind of a bond, and ours is that our families each have a member with Down syndrome. We may not be family to each other, but in a way, our kids are family to each other, and they have a bond we won’t ever know. It’s really great, and it’s really hard sometimes too!

I worry about navigating potentially awkward social situations with people more educated or monied than me or making an offhand remark that sparks a political discussion we are never going to agree on. I worry about having people over to my house and if it will be nice enough or if they’ll look down on us. I did not ever worry that anyone would try to put my kid up against theirs in a developmental competition, however, until those microaggressions began in my child’s first year. What really took me off guard, was that aside from one very strange cafe owner, that competition came from other parents in the Down syndrome community.

It doesn’t just happen to me, of course, I see it in online groups and among other parents. A parent of a child with T21 says something that their child is working on, and other parents respond simply by saying at what age their child picked up that skill– as if such a thing is relevant anyway, with no recognition or support for the success of the other child. Other times parents chime in with judgmental and even fear mongering advice about when to get glasses or what therapy is absolutely essential in ensuring a child’s success in such a way as to show they know more, do more, and their child is in better hands.

Here are some examples of casual competitive parenting within T21 playgroups:

  • A 17 month old with T21 is army crawling at a playdate. The mother of a different toddler with T21 whose child began walking at 15 months asks “How old is he?” with a slightly shocked tone in her voice, and follows up with pointed questions about his physical therapist and a story about how her child began walking and running because of all the specialized therapy she provided.
  • When two similarly aged children with Down syndrome are playing together and one parent demonstrates a skill their child has learned and asks, “Is your child doing this yet?”
  • A T21 parent uses social media to celebrate a new skill their child learned, while another T21 parent makes remarks exclusively about their own child’s accomplishments, perhaps even directly comparing, without so much as acknowledging the accomplishment of the child being celebrated in the post.
  • A parent seeks advice from another parent of a similarly aged child, but with the intention of using the encounter to highlight or list their child’s skill set or compare in order to “catch up” or demonstrate superior skills.

It doesn’t just happen with motor skills or communication milestones, either. There can be a one-upmanship when it comes to types of therapies, amount of therapies, extra lessons or classes, and even whether or not a parent is successful in finding an inclusive placement for their child in school. I have even seen parents self-righteously proclaiming their children as “high-functioning” to other parents. (Side note: functioning labels are really harmful to all disabled people, please don’t ever use them!)

Of course, this type of behavior exists in all areas of parenting. Even empty-nesters compare the careers of their children or grandchild counts amongst one another. Around the time I had my second child, my first child enrolled in a high-performing school populated with a large number of wealthy students whose family culture includes countless lessons, expectations of perfection in every area, and the resources to pursue that excellence. There is an unacknowledged competition amongst students and parents there too. Countless articles and blog posts demonstrate that this is a much broader cultural problem.

There are a number of specific things wrong with competitive parenting as it occurs in circles where disabled children are concerned. First and foremost, it is a microaggression against a disabled child. Children with Down syndrome are an oppressed minority group, and those claiming to be their allies should never use their energy to degrade them, regardless of how friendly and casual the conversation is made out to be. However insignificant it may seem to that parent at that moment, it is an act of violence against the child. Moreover, it’s a microaggression against their own child. When a parent pits their kid against another, it is done out of insecurity. Can you imagine being the kid whose parent always wants them to be on top? That’s an impossible and exhausting pressure, not to mention the pain of knowing your parent is insecure in your abilities.

Secondly, it’s a microaggression against a parent who is constantly advocating for their child in an ableist world. As if parents of children with Down syndrome don’t experience enough anxieties with the pity of parents to nondisabled children, the exclusion of their child in many settings, and a constant worry that they aren’t doing things the right way or providing enough supports. It is particularly hurtful to experience this treatment from a community that is supposed to offer refuge from that.

Lastly, it perpetuates the very ableist culture that rejects and excludes our children with T21. Modern western culture is achievement-oriented, competitive, and ranks children’s worth according to their abilities. We should be challenging this practice in every setting, rather than recreating it on a small scale in our own communities.

I am so lucky to get to watch dozens of babies, toddlers, and young children with Down syndrome grow up in community with my child. It is well worth jumping over the social hurdles of coming from extremely different backgrounds and perspectives to get to know these kiddos and their families (and even extended families). Some of them develop skills and hit milestones on the early side, and some on the late side. Some have ongoing medical concerns and some don’t. All of them are incredible people who bring me joy constantly. 

I would encourage parents of children with Down syndrome to work to build these types of relationships and to work extra hard not to fall into the pitfalls of modern, individualist, achievement-based parenting norms. Celebrate your child with T21 and their accomplishments! Celebrate your friend’s child with T21 and their accomplishments! Those accomplishments have nothing to do with each other except that celebrating them lifts up folks with Down syndrome while comparing those accomplishments drags all folks with T21 down. In a broader culture that does not value or acknowledge the lives and accomplishments of people with Down syndrome we can and should be celebrating constantly– whether that life or accomplishment belongs to our own child or someone in their T21 family. Your heart is big enough to love all the children in your child’s T21 circle and find joy in what they do, I promise.

Disability Justice

Down Syndrome Superpowers

Lauren Smith-Donohoe

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”

Lauren Smith-Donohoe

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.