“Just 4.5 grains- right there.” I stood next to my stepfather in his father’s garage, watching the scale as I measured gunpowder for the bullet cartridge we were assembling. While 9mm bullets can take more, this is the amount his father taught him when he was a kid. He helped me through assembling the bullet, the cartridge, and finally the primer. “If there’s ever an issue getting parts, this part is the part that will be hardest to source. You can reuse other parts, or make your own gun powder, but the primers aren’t reusable.” I didn’t grow up in a militia. This isn’t some cautionary tale. This is one of the basic rites of passage in my area: To have a family member train you in gun safety and use. It’s part of what it means to be an adult in Appalachian Pennsylvania. The day … Continue Reading ››
I understand if it is hard to keep up with the news coming out of this White House. I don’t envy newsroom editors nor the White House Communications Office. With so much breaking news, you may have missed the episode this week where the President expressed his alarm with the growing rate of autism diagnoses. The President should be alarmed by what we have learned from the growing rate of autism diagnoses. As a former White House Presidential Appointee with a background of knowledge on both autism and how epidemics grow, I can tell you that he absolutely should be. But, it’s not for the reason that he thinks.
On Tuesday, the President held a Parent-Teacher Conference Listening Session at the White House attended by Vice President Pence, Secretary of Education Betsy DeVos, Senior White House Advisor Kellyanne Conway, and teachers and school administrators from across the country.
One particular exchange … Continue Reading ››
On February 8, 2016, the ACLU came out with a study of more than 13,000 documents they received from a lawsuit leveled against the Transportation Security Administration (TSA). What the ACLU discovered is that the TSA’s Screening Passengers By Observation Techniques (SPOT) program does not detect suspicious people or terrorists, is not based on any empirical scientific evidence, and is racially discriminatory. The SPOT program makes use of supposed Behavior Detection Officers (BDOs), which look at the nervous tics and behaviors of passengers making their way through crowded airports and try to find evidence of “stress, fear, and deception.”
I read through the ACLU report and its associated lawsuit and had to agree: The TSA’s SPOT program was ineffectual at best and racially discriminatory at worst. There is one group of people that wasn’t mentioned in the ACLU’s report that is important for understanding how harmful the TSA’s program is: People … Continue Reading ››
On Sunday evening, the National Association of Democratic Disability Caucuses held a virtual candidate forum with candidates for Chair of the Democratic National Committee (DNC). Marked by its hosts as a historic step in building a more inclusive party, the forum offered candidates the opportunity to directly engage disabled DNC members ahead of the DNC’s meeting in Atlanta on February 25. There, members of the Democratic National Committee from across the country will gather to elect the body’s next chair. “We have to understand as a community that platitudes and promises are not going to cut it,” chair candidate and former Rock the Vote president Jehmu Greene stated in her closing remarks. Greene was noting the need, in her opinion, for the next DNC Chair to focus less on politics and more on organizing. Reflecting Greene’s opinion and the … Continue Reading ››
When most people think about accessibility in technology, their first thought may be about accessibility for blind or D/deaf people: captioning, visual descriptions or Braille conversion. Blind and D/deaf people aren’t the only ones who benefit from inclusive technology, though. Autistic people, people with learning disabilities, people with ADHD and other neurodivergent people also have access needs that site designers and developers can meet. Here are five ways you can make your websites and apps more accessible for neurodivergent people.
Subtitles and captions for online videos aren’t just for D/deaf people or people with hearing loss. Many autistic people and other people with disabilities can have auditory processing difficulties that make it hard to understand spoken, recorded language. Using subtitles helps people follow what they’re listening to. Subtitles can also help people retain what they’ve heard long after they’ve finished watching the video.
Avoid flashing images and clashing palettes.
Quickly … Continue Reading ››
Each Friday at NOSmag, I’m going to post some links relevant to neurodiversity news and culture criticism around the web. This is what I’ve been reading and that I think you should be reading too. Feel free to add links of your own in the comments and email suggestions for future link roundups to email@example.com or Tweet us @NOSeditorial.
As President Calvin Coolidge signed the 1924 Johnson-Reed Act, he stated, "America must remain American." The Johnson-Reed Act, until 1965, restricted immigration of multiple racial and ethnic minorities into the United States before World War II, including Eastern European Jews. Many of these Jews later died in the Holocaust. The Act restricted these racial and ethnic groups in part due to eugenics “science” that said these groups were more likely to be “socially inadequate,” and become a “public burden.” Eugenicist Harry Laughlin, who managed the Eugenics Record Office, testified in 1920 about foreign-born groups in hospitals for the “insane.” His testimony included the remark, “the Italians, Russians, Austrians (largely Jews) constitute a large proportion of the insane.”
Laughlin had been appointed around 1922 as the “Expert Eugenics Agent” to the House Committee on Immigration and Naturalization, and much of his research and testimonies provided the justification … Continue Reading ››
Note: This post contains medical language and discussion of early death.
Are many young adults with autism dying preventable deaths because they and their families are unaware of Ehlers-Danlos syndrome? When I was a member of the Interagency Autism Coordinating Committee (IACC), I commented when representatives from Autistica UK presented on early death for adults with autism. They didn’t mention Ehlers-Danlos syndrome. I talked about Ehlers-Danlos, my son, and the fear that no one is researching or talking about this. I hadn’t heard anyone previously, and I haven’t seen anything on the topic since. That’s a problem. It’s especially a problem for me and my son.
My son was a serious baby. He was a bit floppy, delayed in crawling, sitting, and walking. He learned to do all three before he was 14 months old. What he did not do was speak. After several rounds of diagnostic testing, he was diagnosed … Continue Reading ››
Autism Speaks is anti-autistic. Autism Speaks spends too much money on cause and cure research rather than things that are actually helpful. Autism Speaks would like to ensure that future generations of autistic people are never born.
All of those things are true. But you know what else is true? Autism Speaks is not the only threat to autistic people’s well-being and autonomy right now. In fact, in the era of Donald Trump’s presidency, it is hard to make the case that Autism Speaks is even close to the biggest threat.
This is not a defense of Autism Speaks. Like most autistic people involved in the neurodiversity community, I am disgusted with Autism Speaks’ long history of ableism. However, I do question whether anti-Autism Speaks activism should be our number one priority as a community at this point.
When we focus all of our energies on Autism Speaks, it becomes easy to forget … Continue Reading ››
Each Friday at NOSmag, I’m going to post some links relevant to neurodiversity news and culture criticism around the web. This is what I’ve been reading and that I think you should be reading too. Feel free to add links of your own in the comments and email suggestions for future link roundups to firstname.lastname@example.org.
A draft of an executive order from the Trump administration would make it significantly more difficult for immigrants with disabilities to legally come to or stay in the United States. The Arc wrote a response.
Note: The following piece contains graphic descriptions of police violence.
February 1st is important for two reasons. It’s the first day of Black History Month. Figures like Harriet Tubman, Leroy Moore, Stephen Wiltshire, Vilissa Thompson, Blind Tom Wiggins and Brad Lomax are iconic in the African Diaspora. They are also Deaf, disabled, and/or neurodivergent. Disability is often erased and overlooked when discussing black history. It shouldn’t be.
February 1st is also the day that shook Calumet City, IL and the black and disability communities as a whole. This year, February 1st marks the fifth anniversary of Stephon Watts’death. Stephon Watts was a 15-year-old African-American male teen on the autism spectrum. He was interested in computers and aspired to one day become a computer programmer. Five years ago, he was murdered by police.
In 2012, the Calumet City police arrived at Stephon Watts’ home. They were there to … Continue Reading ››
In the wake of the 2016 election, voters across America disappointed with the November 8th results mobilized to express their desire for progress. From social media pledges and petitions to large-scale movements like the record-breaking Women’s March on Washington, Americans found creative ways to express their opinions on a divisive election. For more than a few citizens, the election mobilized them to push their civic participation to a new level: Running for office. Organizations devoted to supporting “average citizens” interested in running for office saw a spike in interest across the country. She Should Run, an organization and political incubator that offers nonpartisan training for women interested in running for office, saw 4,500 new sign-ups following the election. There are a large number of programs across the country that provide support similar to, and … Continue Reading ››
Team pages for the Autism Speaks Walks are pretty standard fare. You can go to each page to learn a little bit about a team who is pledging to raise money and donate to them yourself. A quick search of participants shows a wide variety of folks including companies, families, and organizations, which made the “Soldiers of Odin Canada - Ontario South Division“ not particularly unique outside of the comparatively large roster (most team pages are for about 2 people, Soldiers’ page has 10). That is of course, unless you know who the Soldiers of Odin are.At first glance, one might assume they’re just a biker group. Both the name and their team picture, featuring a number of guy all wearing leathers and jean vests, suggest as much. Being a biker group is fine. Bikers have been making the headlines for … Continue Reading ››
Split is M. Night Shyamalan's latest film. Over the course of its story, teenage girls are brutally attacked, watch their friends die, and get both their entrails and strategically sexy parts of their clothing ripped to pieces by a monster. The characters are one-dimensional and unrealistic, nothing more than plot devices. It's basically your generic B-movie, except for one very crucial difference: The monster isn’t the result of a science experiment gone horribly wrong or a supernatural demon. The “monster” is a person with DID, or Dissociative Identity Disorder.
Honestly, saying 'person' is a bit of a stretch as Shyamalan never treats Kevin, our monster, with any shred of humanity. In Shyamalan's vision of mental illness, Kevin doesn't get to be a person. Every other character, no matter how flat, has a life outside of the horror narrative. Kevin's entire existence, in contrast, is that of brutal violence and … Continue Reading ››
What started out as a small group of women coming together after the election turned into one of the largest demonstrations in American history. It was for women. It was peaceful. It was sassy. And importantly, it incorporated a population that is often excluded from progressive causes: The disabled community. But you might not have known that from media coverage or even the programming of the Women’s March itself.
When you have a disability getting to and participating in demonstrations involves detailed advance planning. In order to help out, the Women’s March had an ADA tent. I volunteered While working in the ADA tent, I heard from many people who had difficulty on buses and airlines, difficulty trying to rent or borrow mobility equipment, and difficulty asking friends and family to help support them during the march. I asked a friend to come, not only because I wanted her to be … Continue Reading ››
Serge F. Kovaleski is a Pulitzer-awarded investigative reporter at The New York Times. He has been a journalist for more than 30 years and has worked for the New York Times since 2006. Kovaleski has been in the media quite a lot recently, but most times I see his image or hear him discussed, his name has been stripped away. He has been re-shaped into the iconic “disabled reporter mocked by Donald Trump.”
I am not defending Trump’s mockery. It was childish and despicable. That said, in the long litany of Trump’s offenses against human decency, it is not the worst thing Donald Trump has done during this election cycle. But Kovaleski has been treated poorly now by both sides and it’s time to stop presenting him as a token in ongoing political battles.
Trump is not the only one to assault Kovaleski’s humanity. Since Trump’s ridicule , the story has been … Continue Reading ››
Vox.com’s evening newsletter Vox Sentences headlines are a mix of the serious, with a bit of gallows humor such as “Congratulations, President-elect Trump. Here’s the World You’re Inheriting” and “How to Keep Bears out of Schools, Explained for Trump’s Ed Secretary.”
One half of that newsletter is Dylan Matthews, a correspondent at Vox.com since its founding. He is also on the autism spectrum. Dylan has been a fixture writing about politics for more than decade now, beginning to write blog about politics under the title of minipundit at the age of 14. He eventually wrote for Slate, Salon, the American Prospect and the New Republic before he cut his teeth as at his college newspaper, the Harvard Crimson.
He eventually began writing for the Washington Post under Wonkblog, which was run by Ezra Klein. When Klein left the Washington Post to start Vox.com, Matthews joined him and to … Continue Reading ››
What makes a people? For the last two decades, the Autistic community has struggled with that question. As a community first defined by doctors and researchers, portrayed to the public mainly by outsiders, and often born to non-autistic parents, it can be hard to sort out who we are and how we should relate to each other.
Despite these difficulties, the last few years have found us starting to figure things out. Thanks to an active blogosphere, advocacy organizations like ASAN and AWN, and a strong coalition of leaders young and old working to build our grassroots, the Autistic culture, community and identity is stronger now than it has ever been. In the words of Jim Sinclair, the neurodiversity movement’s earliest leader, "Our community is still young, but a generation of autistic children has already grown up having experience and familiarity with autistic togetherness."
The Autistic identity has grown … Continue Reading ››
Note: A version of this piece was originally published at Thinking Person's Guide to Autism as a part of a series of post highlighting autism and accommodations during Autism Acceptance Month.
The statistics around autism and employment can be incredibly discouraging. Forty-two percent of autistic people in their twenties -- people like me -- are unemployed, even though only 26% of overall young disabled people are out of work. This might seem counter-intuitive. After all, if someone can do well in college or even graduate school, surely they should be able to do well once they join the workforce? Unfortunately, … Continue Reading ››
For the past few days, I’ve been working my way through In a Different Key, a new book about the history of autism. There are many things wrong with In a Different Key. The Thinking Person’s Guide to Autism has been livetweeting a read-through, and I think they cover a lot of the ethical problems with the book – Justifying the murder of disabled kids and minimizing the problems with punishing autistic people with cattle prods and electric shocks is troubling, to say the least. I plan on writing more about that, and I encourage … Continue Reading ››
Four years ago, I was volunteering at the hydrocephalus center for a fairly famous hospital. I had been invited to sit in on an important meeting or procedure – I don’t actually remember which at this point. What I do remember is that I was going to be late. I remember the consuming sense of dread, rage and confusion increased with every passing minute I sat in my car. I couldn’t be late. I didn’t know how to be late. So I did the only thing that seemed sensible to me at the time: I turned the car around and went home. Then I didn’t speak … Continue Reading ››
Thanks to the success of Steve Silberman’s ‘Neurotribes,’ therapists and service providers have become aware of neurodiversity. On one hand, this is wonderful. A concept Autistic self-advocates have been celebrating for years has hit the mainstream. It seems that therapists and service providers are finally listening to autistic people speak. On the other hand, there seem to be many misunderstandings about what neurodiversity, and by extension allyship, entails. Therapy can only be enriched by neurodiversity, if therapists will let it.
A common misconception about neurodiversity is that we are pushing the idea that autism is not a disability. It's true that in general, neurodiversity advocates believe that autism is not a ‘disorder.’ You'd be hard pressed to find advocates who don't consider autism a disability, though. We know, through our lived experience, that autism is a disability. The world we live in was not built for us. Or at … Continue Reading ››
Recently, 4chan-flavored trolls invaded the #autchat hashtag. For the uninitiated, Autchat is a bi-weekly discussion group for Autistic people. Past topics have included friendship, autistic representation in media and strategies for coping with executive dysfunction. The community is usually warm, welcoming and a great place to learn. Instead, participants were told to commit suicide or drink bleach to ‘cure’ autism. The source of their ire? An Autchat regular and middle-aged mother of two described herself as ‘informally diagnosed.’
Autism self-diagnosis is a topic that can evoke strong feelings in many people. It isn’t unusual for adults to self-diagnose. It also isn’t unusual to get a lot of push back or even violent threats for self-diagnosis. Why does self-diagnosis make people so angry? More importantly, why do people self-diagnose in the first place? The hostility directed at self-diagnosis is, fundamentally, based in ignorance of what factors lead to its existence: Healthcare … Continue Reading ››
This week, Sesame Workshop launched a campaign, ‘See Amazing,’ to help educate their audience about autism. A new puppet, Julia, helps beloved characters Elmo and Abby Cadabby model how to interact positively with autistic children in a digital storybook. Parents and siblings of autistic children share their experiences and provide a glimpse into their lives. A new music video, The Amazing Song, stresses that people communicate differently and that’s OK. All children are amazing in their own way.
The ‘See Amazing’ campaign is heartwarming and accepting. Full disclosure, I cried (in a good way) the first time I saw the video for The Amazing Song. Instead of asserting that alternative forms of communication and expression, like hand flapping, are wrong or pathological, they’re presented as simple difference. In videos that feature real people, autistic children communicate using augmentative and alternative communication (AAC) devices … Continue Reading ››
This Tuesday, presidential candidate Bernie Sanders once again linked the recent mass shooting at Umqua Community College to mental illness. This wasn’t the first time Sanders has conflated the two issues and that makes me nervous. Mental health policy based on the assumption that mentally ill people are more likely to murder others is not only untrue, but heaps stigma onto an already vulnerable population.
The day of the massacre, Bernie Sanders appeared on MSNBC. One of the first policy positions he took on the subject was that people who are mentally ill should not be able to own guns. Personally, I don’t have any desire to own a gun, but it’s utterly fallacious to lump disabled people and violent criminals together without even a pause. In the … Continue Reading ››
Last weekend, I protested an Autism Speaks rally at the National Mall. A handful of us, mostly Autistic, stood and watched as thousands of people went to raise money for the biggest autism organization in the United States. Upbeat music blared from an enormous stage. Cheerful college students and families with young children packed the sidewalks, despite the dismal weather. Some people wore homemade t-shirts and hoodies with their autistic relatives’ smiling faces emblazoned across the front. These people are, for the most part, good people. They care about their families. They care about their communities. They love the autistic people in their lives and want to do … Continue Reading ››
It seems like hardly a week passes without some pearl-clutching thinkpiece bemoaning how social media is destroying meaningful human interaction. People are looking at their screens instead of making eye contact. We aren't using our mouths to talk to each other. Instead of telling each other how we feel in detail, we click the “like” button to express approval. We sit next to each other in cafes and don’t look up. This phenomenon has been described as the end of intimacy. However, it’s the exact opposite. As an Autistic person, I’ve never felt more understood or free.
I’ve always felt more comfortable communicating in text. In high school, I had a lot of difficulty making friends. I was bullied. I’d happily expound … Continue Reading ››
When Martin Shkreli’s company, Turing Pharma, purchased the rights to a drug, Daraprim, and hiked the price from $13.50 to $750 per pill, my first response was outrage, along with the rest of the internet. Unlike most of the internet, I also felt a distinctive jolt of fear. I am part of the small population of people who rely on Daraprim.
Many articles describe Daraprim as a drug used to treat AIDS, but that’s not quite accurate. Daraprim treats toxoplasmosis. About a quarter of Americans are infected with toxoplasmosis, but for most, it’s not anything serious. Some people feel some minor flu-like symptoms for a few weeks, if they feel anything at all.
For pregnant mothers and people who are immunocompromised however, toxoplasmosis is something much, much worse. Without the benefit of a healthy, developed immune system, toxoplasmosis causes ocular and neurological damage. Most of the people at serious risk are AIDS … Continue Reading ››
Last September, I started thinking about an online magazine for the neurodiversity community, and what that would look like. I wanted a platform that would amplify our voices so that we could be better heard, in whatever language or communication suited us best. Together, our voices could be louder, bigger and brighter. I wanted to make a platform where the fact that we can and do speak for ourselves could not be ignored. This was the seed that would eventually grow into NOS Magazine.
There were setbacks. I had a bout with cervical cancer (and won), but it slowed the project considerably. I kept going. I read everything I could about how to make crowdfunding work. I examined similar projects. Christine Paluch helped me build a web site while I refreshed my WordPress skills. Morénike Onaiwu and Mariyama Scott offered their services as editors. Ari Ne'eman introduced me to many of the … Continue Reading ››