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Reimagining School After the Shutdown

When California schools shut down in mid-March of 2020, classes picked up on the now ubiquitous Zoom app within a few days. This shift happened very quickly, and never evolved to meet the needs of most students, let alone disabled students. While adult disability justice advocates have lauded increased accessibility by way of remote events and working from home, a huge injustice has been done to disabled students, who have not generally found remote schooling more accessible. Mothers in particular have taken on the brunt of work to try to fill the gaps when they were already overburdened with this task before the pandemic, and they are struggling. Schools were shut down early, not because most children are especially at risk from COVID-19, but because they can spread it to adults so easily. Now, while infection rates are still much higher than March 2020 and variants more dangerous to children have begun circulating with a kids vaccine at least 4-5 months out, they are being pushed back into schools in trial “hybrid” models, combining in-person school with remote. Now that students are returning to school and many who are remaining remote will return in the fall, districts should be planning for an inclusive model to benefit all children, but they aren’t. American schools were not designed and have not been maintained in order to provide quality education to all students– they were designed to support the ruling class. It’s impossible and unwise to return to how things were before, but it is possible to use this crisis as an opportunity to change everything for the better.

Right now a large number of students in general and disabled students in particular are struggling to access the remote school model. Some students cannot participate in Zoom class at all. Shortly after school shut down in mid-March 2020, they, scrambled to enact online classes. Elementary and public preschool students use Zoom for class time, SeeSaw for assignments, iReady for math, reading, and assessments, and EpicBooks for reading. Many cannot access these apps and districts are not ensuring proper tech support by supplying iPads for touch screen use when kids can’t use a Chromebook. Video class time is especially difficult for disabled students under 10. Some simply can’t participate at all. Often this is framed as a behavioral issue rather than an access issue.

Some children can participate with intensive parent support, but in families where more than one child needs such support or the supervising parent must work simultaneously, online class time is fraught at best, and absent at worst. Therapies for speech and motor skills often rely on parent support to facilitate activities.

Middle and high schoolers use Zoom, Google Docs, and often are assigned to watch videos and listen to podcasts. Middle and high school students are assigned frequent written assignments that must be completed on a computer. Students struggle to keep up with assignments and keep track of class times. Again, parent supports are required, but parents are often struggling to help other children, work, and maintain their home.

Many older students who use IEPs and 504 Plans to access education were in General Education and getting good grades before the pandemic, but when schools closed, they began failing classes. For high school students, this affected both their ability to get into college and their ability to qualify for scholarships. The consequences of using a one-size-fits-all model will be a lasting impact on the educational and earning potential of many students. Students in California who had some of the longest school closures, will be competing for placement and scholarships with students in other states who returned to school much earlier and had more resources.

At least 1 in 25 Americans has ADHD, while 1 in 54 are autistic, and somewhere between 5-15% of students have dyslexia. These are just the most common disabilities students can have that affect learning at school. ADHD and Autism, as well as Down syndrome and other disabilities impact executive functioning– the ability to manage time, organize tasks, and complete projects, amongst other things. The prevailing model of remote school poses extra challenges to these students and those with other disabilities. That means that a large number of students are being under-served before taking into account that the prevailing model is often inaccessible to typically developing students as well.

Over the last year, assessments have been a huge challenge for districts to enact. Special Education students are generally assessed frequently throughout the year to keep track of their IEP goals, with an intensive, multi-focus assessment done every three years. For students who cannot use video calls and complete tasks, assessments are incomplete, if they’re done at all. Some Special Education students have spent the last year simply building up a tolerance to inaccessible video therapies and have not progressed to actually doing therapy, leaving therapists unable to assess.

This is not because it’s impossible to assess students during the pandemic, it’s because most California districts have insisted on using the prevailing remote model only. No alternatives were explored and this shows that districts do not consider special education a priority. Schools are often relying on parent-provided data for IEPs going into the next year, but as experienced as many parents are, this is likely to be partial or inaccurate data because parents aren’t therapists and they shouldn’t have to be.

Supports for students struggling due to remote school inaccessibility could have existed in a lower-risk way. This is especially true for 2021 if teachers and therapists had been considered in the California COVID-19 vaccination schedule in Tier 1a as essential in-person workers. Given that it took petitions and protests to get caregivers for disabled family members and disabled people themselves prioritized in the vaccine schedule, it is not a surprise that this was overlooked by legislators. Disabled people, disabled children in particular, are never considered a priority.

Remote supports for therapies could have looked like individualized home resources for therapy early on. Districts could have worked with parents to find alternative apps and educational materials and provided them. Consultation model therapy where therapy sessions allowed parents to consult with therapists to incorporate strategies into the day, rather than specific activities to be completed as homework could have been implemented where appropriate. Low risk staff living in low risk households could have held outdoor therapy sessions for kids most impacted by remote school inaccessibility. These are only a few ideas; imagine if dozens of experienced educators had been working on this all around the state.

Instead, parents are receiving emails that say things like, “Your child’s IEP is coming up. Since [your child] isn’t participating in school, I cannot assess their progress this year.” If a child cannot access the classroom, it is not that they aren’t participating, it is that they are being excluded. Of course, teachers and administrators know that any admission that a Special Education student isn’t able to access the classroom noted in their IEP would be evidence for a lawsuit against the district. Still, that language puts the onus on the child and treats a situation where the child is actively being harmed as a behavioral issue on their part. Literally blaming the victim. Schools are also using language such as, “Due to COVID-19 restrictions, assessments were not able to be performed,” which at the very least is not victim blaming, but it is a cop out meant to skirt responsibility and therefore liability.

With all of these restrictions supposedly preventing schools from doing what they are obligated to do by federal law and what would be funded by federal funds, one might think that they would jump at alternatives proposed by parents and outside professionals. However, in most cases when alternatives were proposed by families based on their experience or consultations with professionals, they were dismissed by school administrators. Most schools in California did not change their model to be more inclusive and accessible to all children, nor did they accept individual changes for students who were struggling. They simply adopted a model at the very beginning of the shutdown and bare-knuckled it through the year, leaving thousands of students behind.

A large number of Special Education students, especially in preschool and early elementary, essentially dropped out of school. Whether they participated in some aspects or not at all, they did not have the same access to participate, and ultimately did not have a school year at all unless their parents had the resources to hire teachers or teach themselves. Many schools set a minimum standard for attendance in order to continue receiving attendance based funding, such as logging into one Zoom meeting time, turning in one SeeSaw activity, or completing one iReady section in a day. After that, kids were left to whatever resources their parents could provide them, assuming they could even access those standards in the first place.

One of the biggest complaints parents have had about remote learning is that there is very little to no communication with parents and teachers. This is likely not the fault of teachers, who are extremely overworked and under-resourced at this time, with overloaded inboxes, often caring for their own children while teaching. It is the fault of administrators and legislators. A time structure for the week could have been set up that allowed teachers to interact with students regularly on a one on one basis. Class time, much of which is often taken up by roll call and technological difficulties could have been reduced in favor of small groups. There are many ways to organize a week, but most schools chose to try to replicate in-person learning over Zoom.

It’s not like there aren’t already many models for online education and distance learning, administrators just refused to explore them. Districts could have taken it seriously that disabled students were disproportionately affected by inaccessibility and worked on a model that included them, but despite pleas from parents, they did nothing. Truly inclusive education models that make school accessible to disabled students benefits all children, educationally and socially.

As districts held fast to ineffective models, mothers dropped out of the workforce to help facilitate remote school and homeschooling in large numbers. Many mothers were already out of the workforce, but had to add several hours of additional work to their already overloaded day. Their email inboxes and mobile phone apps flooded with near-constant notifications from school. While all parents had to take one for the team when schools closed, mothers were disproportionately affected, and it will impact the rest of their lives in many cases, due to lost savings, retirement, job history gaps, career stalling, and I’m just going to throw in living on the edge of a nervous breakdown for over a year. Mothers who are already disproportionately burdened with the majority of childcare and home management found themselves taking on more and more work with far fewer support resources. Mothers are already more likely to have taken hits to their job history and retirement savings, as well as more likely to be earning a lower wage than their male coworkers and significant others. They are also more likely to be the sole provider and caregiver for their children.

For mothers of disabled kids, many of whom are disabled themselves, there was already an additional burden of managing the administrative tasks associated with having a child in Special Education or needing therapies, supports, advocacy, and often more healthcare needs. The amount of work expected once schools shut down was crushing for many. There simply aren’t enough hours in the day to take on another full time job on top of what they were already doing.

While mothers were asked to sacrifice their jobs and mental, physical, and emotional well-being, children were asked to give up their friends, supportive adults, routine, and safety net at school in order to keep everyone else safe. At the time schools closed, children were not at a particularly high risk of severe complications from COVID-19 and cases of COVID-19 were relatively low. Now that adults are vaccinated and returning in larger numbers to in-person work, schools are forced to re-open to provide childcare. Children are not currently eligible for any COVID-19 vaccine, and new COVID-19 variants are affecting children more seriously.

Disabled children are often more susceptible to illness and have immune differences that impact the way they get sick and recover from illness. For example, the predominant difference (despite what people may think) in people with Down syndrome from people without is an overactive immune system. This means that people, including children, with Down syndrome tend to get more sick when they have a viral or bacterial infection. They are more likely to go to the hospital, and they are more likely to have one or more autoimmune disorders that make is more dangerous to get sick. New studies have found that people with Down syndrome who contract COVID-19 are at least 10 times more likely to die from it. Many other disabilities that children experience are related to weakened or overactive immune response. So after asking these children to give up their education and social relationships while poorly serving them during quarantine, now they are supposed to go back into a much higher risk environment to try out an experimental hybrid model. This is wildly unfair and dangerous. It’s a disservice to all children, but as usual, disabled children will continue to experience more harm.

Partway through the shut down, some districts created small, in-person cohorts for Special Education students only, but this was like putting a bandage over a hemorrhaging wound. Disabled children have a right to learn alongside their typically developing and disabled peers. Segregated Special Education is more than a disservice, it’s oppressive and harmful. These cohorts did not offer integrated or inclusive education, something that has been shown to be so beneficial to disabled kids that it should be the bare minimum standard for all students. With the push to return children to school in much larger numbers, districts have not taken disabled students into account as more than an afterthought– which was common and problematic in pre-COVID times, but it’s potentially deadly now. The choice for many disabled students is to continue a segregated education or risk their actual lives. This is considered the best it gets for many IEP and 504 students.

The thing is, the structure of school is meant to reinforce the rest of the system in America. It is not meant to provide limitless opportunities for learning or create class after class of critical thinkers. It is meant to continue creating stratified classes of worker to be exploited. Disabled students are not a priority in education because they are less likely to be “productive” workers. There is no incentive to the powers that be to overhaul public education, and certainly not so that disabled students can have better lives. Racism, ableism, classism, and patriarchy are built into the foundations of schools and that serves them well. The system is working how it’s designed.

When they teach Manifest Destiny and other colonialist lessons, it isn’t just so we can be blissfully unaware of our appalling history as a nation, it’s so we will stand by when colonial projects like the Keystone X Pipeline steal and pollute native land. Disabled students are segregated in separate classrooms because we are meant to learn that they don’t belong in our society. It’s much easier to institutionalize people when many people grow up barely knowing they existed in the first place. When Martin Luther King Jr. and Malcolm X are relegated to the educational equivalent of trite infographics, it’s not because they want to make them relatable, it’s because they want to erase their militancy. Filipino militants are erased from lessons about the farmworker struggle and Cesar Chavez is given precedence, not because he was the best or only leader, but because racial solidarity is a threat to the racist state that Chavez worked to uphold.

Reforming schools won’t work in the long term. They were never meant to serve us or our children– any of us.

Schools have been under-serving disabled students for as long as there have been schools. They have been under-serving all students. The last year has shown us an implosion of the school structure, highlighting ongoing failures and showing clear as day that the existing models don’t work. Schools went from bad to worse, but the last year also showed how dependent we are on schools to provide care and offer services and supports to kids. Why do we as parents and educators accept that things are a good as they can get? The resources exist to make schools that are physically and educationally accessible to all students and to give them meaningful opportunities to learn and grow. We just have to demand them. It’s never too late to make things better, but it can’t happen unless we force it.

Instead of thinking about all the ways we could overhaul existing schools and make changes in class size and staff ratio, we need to be thinking about tearing it all down and starting over from scratch. We can’t keep pushing for marginalized students to have better in a system that sucks for everyone. What good is a bigger piece of the pie if that pie is garbage? We need to reimagine collective education entirely.

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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!