In this issue,
- Trans Autistic
- Medical model flow
- Embrace the obsession
- Designing with mental health in mind
- Minority Media
- Psychological safety in the age of Trump
- Disability in the age of Trump
- Written communication as social equalizer
- Hidden disability
- Sensory Regulation, Sensory Diet
- Biased design
- Design, Engineering, Skills, and Social Justice
- Self segregation
- Empathy Gap and Critical Distance
- Racial Wealth Gap
- The Green Book, Erasure of Black History, School to Prison
- Inspiration Porn
- Bias at Work
- Accessibility for Real Life
I added this selection from ASAN’s statement on the needs of trans autistic people to Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity .
Misperceptions about what it means to be transgender or about autistic people’s ability to understand their gender or make decisions about their bodies often prompt service providers or family members to stand in the way of transgender autistic people’s attempts to live life with authenticity and dignity. This can include denying transgender autistic people access to transition-related care, subjecting them to “normalization” treatments aimed at suppressing their gender expression, or placing them in guardianship or institutional settings that restrict their decision-making power. While research suggests a large overlap between transgender and autistic communities, trans autistic people often lack access to services and supports that understand and respect all aspects of their identity.
“Too frequently, autistic people are denied basic rights to make decisions about our own bodies and health care, including when it comes to expressing our gender identity,” said Sam Crane, Legal Policy Director for the Autistic Self-Advocacy Network. “Whether we’re transgender or not, autistic people’s gender identities are as real as anyone else’s and should be respected and supported, not dismissed based on baseless stereotypes.”
I also added this selection.
“A common misconception is the assumption that gender and sexuality are irrelevant to autistic people, or that our sexuality and gender identities are symptoms of our autism,” said Bascom. “These beliefs are not only inaccurate but also profoundly harmful to autistic people and are often used to prevent autistic LGBT folks from accessing LGBT spaces, authentic relationships, and transition-related health care. The reality is that autistic people can have a beautiful diversity of gender identities and sexualities, and we have the same right to self-determination as anybody else.”
Medical model flow
I’ve had a lot of exposure to the medical model and relate to these grafs.
“Yes, there are some who understand that my medical and mental health needs directly correlate to my gender and sexual identity, but it is not an easy thing to find,” said Rox Herrington, an autistic trans man. “It took me years to find doctors who understood how to relate to me, and there are still many times where I mention that I’m autistic and that I’m transgender that I will be immediately shut down.”
“As a genderqueer, nonbinary trans person, I’ve found that it is possible to find health care providers who are very competent with transgender/gender-nonconforming people, but they are highly unlikely to also be competent in working with autistic people in a non-pathologizing way,” said Lydia X.Z. Brown, chair of the Massachusetts Developmental Disabilities Council. “Likewise, most health care providers I might feel comfortable sharing about being autistic with, and who would be more likely to be more respectful and non-ableist, seem not to have much experience working alongside [transgender/gender-nonconforming] people.”
I am sorry to admit this pervasive ableism has too often informed the way I’ve interacted with autistic patients, LGBTQ or otherwise. Regardless of their gender or sexual identity, autistic and other disabled patients have every right to have those identities acknowledged by their medical providers. Everyone who delivers care to autistic patients should be sure they’re aware of the full person in front of them, not a preconceived notion of what they may or may not understand about themselves.
It was also dismaying to see how many people told me they don’t tell medical providers they are autistic because they fear being patronized or dismissed. Just as LGBTQ people should feel no inhibition from sharing information about themselves with their physicians, people with any kind of disability should be able to walk into a doctor’s office and feel confident they’re going to receive care that is respectful and meets their needs. Clearly the medical community has work to do when it comes to how we care for our autistic patients.
Embrace the obsession
“Many of our study participants referred to their preferred interests as a ‘lifeline,’” said Kristie Patten Koenig of New York University who led the study published this week in the journal Occupational Therapy in Mental Health.
Overall, 92 percent of study participants said that their interest areas provide a calming effect for them.
What’s more, the vast majority — 86 percent — said they have a job or are in school or other training that’s related to their preferred area.
Of the adults studied, most reported that their interests were not static over time, with 68 percent saying that they have different preferences as adults than they did as youngsters.
While about half of those surveyed said that their parents were supportive of their intense interests, only 10 percent said their teachers were.
“This highlights an important gap in the educational practices of supporting students on the spectrum and the potential for incorporating their preferred interests in the classroom,” Koenig said.
For more on embracing obsession, see Advice to Teachers and Parents of Neurodivergent Kids from my primer on the social model for minds and bodies.
Designing with mental health in mind
With great examples of designing for real life.
For those who work in consumer products, for every company that hopes to serve a billion or more people, there is a challenge and responsibility to build products in a way that serves and supports customers who are the most vulnerable.
Another step we can take in supporting vulnerable customers is allowing them to choose their preferred form of communication.
While the high majority of our customer support is done through in-app chat, we are regularly in touch with our users via email or phone calls. However, for many people speaking on the phone is something that can cause great anxiety, or accessing emails isn’t straightforward, or perhaps they find the Intercom method of chat unusual.
My autistic operating system particularly relates to this:
for many people speaking on the phone is something that can cause great anxiety
I’m an autistic parent trying to get my neurodivergent kids through systems that don’t accommodate us. A big barrier is the amount of spoken communication required to navigate hospitals, insurance companies, school systems, recreational sports leagues, and even agencies and institutions that claim to understand autism. If my wife wasn’t a high energy talker, we’d be doomed. “Phones, phones, phones” and “Call if you have a problem” are barriers.
Using the phone appears to be a challenge for many autistic people. All of the non-verbal cues which (we have tried to learn) aid communication — are stripped away. It’s just a voice.
As we use phones less and less in our social lives, I think it becomes even harder to communicate in this way. Every time I have discussed phones with other autistic women, we all describe high levels of anxiety around making and receiving phone calls. Screening calls seems to be common, as does silencing our phones, using caller display, and relying on our answer-phones. If we are expecting an important call, we will wait on tenterhooks, unable to do anything else until that phone call is complete.
Making phone calls is equally problematic. We plan what we need to say and adopt our ‘making a phone call’ persona, reminding ourselves of the conventions of making a phone call. We worry that the call will not be answered by the person we want, and have planned, to speak to. We dread having to explain the purpose of our call to a receptionist or some random person answering the phone. And what if it is an answer-phone? Before we make that call we prepare and rehearse numerous scripts for every conceivable possibility. Unfortunately, when an actual human answers, we are likely to forget the scripts and get in a muddle which sets the tone for the call.
Aversion to phones is often used against us by placing phone requirements in cancellation flow.
This year, we saw more underrepresented groups being hired as writers, making media, and finding their voice. We’ve seen and felt their presence other platforms – black teens made culture on Vine, black women fueled worldwide movements like Black Lives Matter, and #BlackTwitter showed up making memes, vernacular, and blessing us with things like the Mannequin Challenge. That value cannot be understated, but it’s also not enough. As the death of Vine has shown us, simply being an individual creator on a platform isn’t always enough, since you’re at the behest of the powers that be – and those powers are mostly always white.
Despite hiring more minority writers, the power structure in legacy news organizations is still largely controlled by the same types of people. We need more Dodai Stewarts, Lydia Polgreens, and Elaine Welteroths leading editorial teams. We as an industry must invest in black women, Latina women, Muslim women, Asian women, Native American women, members of the LGBT community, and more.
Teen Vogue has shown us the way. Their incisive political coverage has shocked many who believe the magazine to only cover the best hairstyles or nail polish for teen girls, but after Welteroth took over as editor in May, Teen Vogue’s editorial strategy was steered to tackle the heady topics of racism, feminism, activism, and the rest of the -isms, covering these topics better than most traditional news organizations. They’ve demonstrated that when a black woman is in charge and gives younger women the room to write what they believe in, good things happen.
Psychological safety in the age of Trump
Disability in the age of Trump
For people with disabilities who are also from other marginalized populations, the dangers are heightened. Disabled people of color experience significant health disparities, have high unemployment rates, and are at heightened risk of being victims of violence and police brutality. Students of color with disabilities contend with discriminatory school discipline policies and an education system that reinforces the school-to-prison pipeline. These are only a few of the many examples of why we need an administration that understands the importance of intersectionality.
Moreover, students with disabilities aren’t truly given school choice: No choice exists if private schools can legally refuse to provide appropriate and necessary services and supports, which is often the case. In fact, generally, protections under federal laws such as the IDEA, the Americans with Disabilities Act (ADA), and the Rehabilitation Act, do not extend to students with disabilities who attend private schools. In other words, private schools who do not receive federal funding have absolutely no legal duty to support students with disabilities.
Written communication as social equalizer
Where would I be without pervasive written communication? Pursuing the ability to communicate with text is the defining arc of my career.
Written communication is the great social equalizer.
Remember this if you start to fear your Autistic child is spending too much time interacting with others online and not enough time interacting with others face-to-face. Online communication is a valid accommodation for the social disability that comes with being Autistic. We need online interaction and this meta-study demonstrates exactly why that is the case.
I couldn’t help wondering, since the study showed the durability of first impressions and the positive response to the written words of Autistics, with all visual and auditory cues removed, could we mitigate childhood bullying in any way by having a class of students meet first online, in text, and form their first impressions of one another in that format before ever meeting face-to-face?
Getting online was revolutionary and may have saved my life.
But when I got online, no one could see (or smell) that about me. All they could see was my words and ideas, and that was what people judged me by. For the first time in my life, I was not found lacking. I made friends of all ages. I was respected and liked. The difference between offline and online communication could not have been more dramatic.
I added that quote to the Backchannels section of Communication is Oxygen and to a new Backchannels section of Writing in Education and Plain Text Flow.
I often bring up the ableist action of harassing/accusing ambulatory wheelchair users (as well as scooter, walker, crutches, and cane users) of “faking” because it’s something that happens ALL the time under the guise of “allyship” that people seem to WANT to remain oblivious to.
A person standing up from a wheelchair or standing without their mobility aid SHOULD NOT be cause for alarm, should not inspire accusations of faking, should not inspire you to say, “it’s a miracle!” in a mocking tone, or to ask me if I should “really be parked here”, or recommendations of weight loss so I won’t “need that chair anymore”, or whispering about how my karma is coming or how I’m going to hell for “playing with a wheelchair”; all comments I’ve received from strangers for just standing in public, getting my chair out of the trunk of my car on my own, or doing something as minimal as riding my chair while being young and smiling.
It’s prejudice; it lacks understanding to how diverse disability is, it uses a singular representation of wheelchair users to judge all wheelchair users. When people are called out on that ableism, those who do it will become defensive and claim to be acting in defense of disabled people because they truly deeply believe in the myth of a “faking disability epidemic”, but hear this: non-apparent disabilities/invisible disablities, etc. are REAL disabilities and you are harassing the very people you are claiming to be advocating for.
I added this to Hidden Disability.
Sensory Regulation, Sensory Diet
Sensory regulation and sensory diet are important to knowing and managing my limits.
To live more comfortably in a world that is not set up with our sensory needs in mind we must learn to brings intentional regulation to our sensory system because out body does not do that for us automatically.
Something about autistic sensory difference that I do not see addressed in the literature is the fact that sensory system needs change over time.
However, over time, implementing the very same sensory regulating strategies doesn’t keep on delivering the same results. This is because the sensory system needs change over time (Endow, 2011).
It is important for autistic adults to be aware of the fact that their sensory needs will likely change over time. When you think of it, it makes sense because all human beings experience this. When you are autistic and have a very sensitive system that does not often regulate automatically you need to be aware of this possibility and watch for the changes.
A biased, unethical design choice.
Design, Engineering, Skills, and Social Justice
Glad to see social justice as part of Girls Garage pedagogy.
We offer year-round instruction for girls to bring their audacious ideas to life.
After-school, over the summer, or on weekends, girls can work towards their 10-module Fearless Builder Girl certification and earn skill badges along the way. Integrating design, engineering, serious skills and social justice, our programs equip girls with the confidence and tools to build anything they can imagine and to grow alongside one another and their communities.
Source: Programs – Girls Garage
There is no path toward educational justice that contains convenient detours around direct confrontations with injustice. The desperate search for these detours, often in the form of models or frameworks or concepts that were not developed as paths to justice, is the greatest evidence of the collective desire among those who count on injustice to give them an advantage to retain that advantage. If a direct confrontation of injustice is missing from our strategies or initiatives or movements, that means we are recreating the conditions we’re pretending to want to destroy.
As a tool maker in the tech world, I’m feeling this one.
Many in the tech world imagined that the Internet would connect people in unprecedented ways, allow for divisions to be bridged and wounds to heal. It was the kumbaya dream. Today, those same dreamers find it quite unsettling to watch as the tools that were designed to bring people together are used by people to magnify divisions and undermine social solidarity. These tools were built in a bubble, and that bubble has burst.
The United States can only function as a healthy democracy if we find a healthy way to diversify our social connections, if we find a way to weave together a strong social fabric that bridges ties across difference.
Source: Why America is Self-Segregating
When we engage in the commons and diversify our connections, we create serendipity.
Empathy Gap and Critical Distance
Although there has been more and more discussion about the lack of diversity in tech, I believe there is still a startling empathy gap as most people do not realize the sheer amount of energy minorities expend trying to belong. The ideal solution is simply to have companies that are diverse, so that no one feels out of place and everyone can thrive.
As a first step, our white, male-dominated industry needs to recognize the real struggle that underrepresented groups face and start driving conversations and actions to create a more empathetic and inclusive workplace. Without such empathy, most companies will continue to fail to achieve true organizational buy-in and won’t be able to take the necessary actions to attract, retain, or get the best work from people who come from underrepresented backgrounds. We can all contribute to finding solutions, but many people in tech don’t bother looking for those solutions because they fail to see the problem in the first place.
Critical distance is necessary not just to critical thinking, but to empathy.
Marginal people are those who are the dominant culture to some extent but are blocked from full participation because of their social status. One need not be a marginal person to be a sociologist, but marginality has often provided the critical distance necessary to inspire a thriving sociological imagination.
Racial Wealth Gap
Research probing the causes of the racial wealth gap has traced its origins to historic injustices, from slavery to segregation to redlining.1 The great expansion of wealth in the years after World War II was fueled by public policies such as the GI Bill, which mostly helped white veterans attend college and purchase homes with guaranteed mortgages, building the foundations of an American middle class that largely excluded people of color. The outcomes of past injustice are carried forward as wealth is handed down across generations and are reinforced by ostensibly “color-blind” practices and policies in effect today. Yet many popular explanations for racial economic inequality overlook these deep roots, asserting that wealth disparities must be solely the result of individual life choices and personal achievements. The misconception that personal responsibility accounts for the racial wealth gap is an obstacle to the policies that could effectively address racial disparities.
The Green Book, Erasure of Black History, School to Prison
Our collective lack of knowledge around many black heroes and heroines can also be attributed to the fact that we continue to rely on our nation’s school systems to educate us—the same systems that we are fighting against to make sure that slavery isn’t referred to as “unpaid work” and that our children aren’t stuck in the school-to-prison pipeline. Our collective lack of knowledge around many black heroes and heroines can also be attributed to the fact that we continue to rely on our nation’s school systems to educate us—the same systems that we are fighting against to make sure that slavery isn’t referred to as “unpaid work” and that our children aren’t stuck in the school-to-prison pipeline.
Media coverage of disability is often informed by some of our worst ideas about difference. Coverage of disability tends to be pornographic - not in the sense of sexual titillation (mostly), but focused on evoking feelings in the consumer, rather than authentically displaying the lived experience of the subject. In the disability rights community, we tend to critique suchrepresentations as “inspiration porn,” a phrase popularized by the late activist Stella Young.
There are at least three basic types of inspiration porn. In one, a disabled person does something normal - like dance to Lady Gaga - and the viewer feels inspired because the disabled person can do this normal thing. Look at them overcome their disability! the narrative goes. This framework cheapens real accomplishments and rarely considers the socially-constructed obstacles to broad success for people with disabilities.
In the second type, an abled person does some basic act of kindness - such as having lunch with an autistic kidisolated at school, stopping work to feed a disabled customer at a restaurant, or inviting a disabled teen on a date. The abled person is then celebrated for their goodness, with the disabled person turned into an object on which the able person acts. Again, structural issues leading to the need for abled intervention vanish.
In the third type, often distinguished as “tragedy porn,” a horrible situation involving a disabled person is displayed, sometimes with comments about overcoming or courage, with the goal of providing perspective on your own (presumably not as bad) troubles. Perspective can be good, but again, the disabled person’s experiences are being leveraged as a tool to make the viewer feel something.
“Cuteness is a way of aestheticizing powerlessness.” Many disabled adults, especially those with Down syndrome and Little People, are treated as perpetually cute children.
Because disability is a part of humanity’s natural diversity, it needs to be part of the important conversations we’re having about inclusivity.
Disability as identity and disability pride may be familiar concepts within the disability rights community, but they’re still pretty radical for the ableist world as a whole.
I updated Inspiration Porn, Growth Mindset, and Deficit Ideologywith these quotes.
Bias at Work
The bottom line is that patterns of unchecked biased and offensive behavior in the workplace have the potential to erode full employee participation and take a toll on organizational effectiveness.
Given the risks and challenges, how can you draw attention to the bias or offensiveness without putting the other person on the defensive? What are some approaches most likely to limit unintended adverse consequences?
Accessibility for Real Life
Here’s what I bring to the table: a valid credit card, 90 seconds of my time, and my right thumb. The rest is up to you
Make your content awesome, so I don’t have to be: I’m nearsighted and I just turned 40, so the other end of my vision is starting to go, too. I could jack up my font, but I literally don’t have time to wade through the settings menu. I’m probably squinting at a site at 4 am, hoping the headings and navigation are crystal clear, and that the first paragraph of text tells me no poop in five days is perfectly normal and I’m doing a great job.
Inclusive design and a great user experience used to be luxuries for me—now I understand how essential they are, especially for folks whose abilities and capacity are different from mine. Users really are relying on you and your team to create sites and apps that make their lives easier.