Allism is on the Rise. Are Seatbelts to Blame? [Repost]

*All the satire.*

“Skeptics call them anti-clikkers, but more and more parents have done their research and are raising their concerns – Seat belts, they say, caused their children’s allism.”

“Allism, a neurological disorder characterized by excessive eye contact, lack of stimming, lack of passionate interests, and an unusual level of anxiety regarding conforming to social norms, is on the rise.”

“Whenever I meet someone who is related to someone who lives without autism,” said Karen, “I ask them if their loved one was put in a car seat as a baby.  They all say yes.  Every.  Single.  One.”

“Anti-Clikkers caution parents to do their research and considering leaving car seat restraints loose so as not to put pressure on the baby’s acupressure points which might trigger pathological extroversion.”

This is a humorous article that highlights two serious issues. First, the idea that autistic people are broken is turned on its head through the perspective of autism as normal, and “allism” as the aberration. Second, highlighted is the common logical fallacy that pins the blame for disabilities on factors ever-present in the modern environment: whether we are talking about vaccines, gluten, “toxins” or in this case, seatbelts.

Allism is on the Rise. Are Seatbelts to Blame?

From Crayons to Perfume (Or From ABC to 2X^3): Reflections on my Teacher of the Visually Impaired

They say it takes a village to raise a child. A disabled child’s village may become more complex than that of a typical child. But, if we are lucky, disability can invite quality relationships with adults that we might not otherwise have.

When I think about my own village, my memory quickly turns to my Teacher of the Visually Impaired (TVI), Mrs. Bonnie Gursh. I was fortunate to have her as my TVI from my first day of kindergarten until my last day of high school.

Arguably, one of the most important jobs for a TVI is to teach braille. A good TVI should be braille-knowledgeable and braille-positive. Mrs. Gursh was both of those things. The thing I always associate with her memory is the sound of her typing furiously on the Perkins brailler, a typewriter-like device used to write braille on paper. At all three of my schools, Mrs. Gursh set up shop in a dedicated “resource room” and whenever I passed this classroom, I almost always heard the clattering of the brailler keys, the bell ringing that signaled the end of each line, and the sound of paper being extracted and a new page being loaded into the device. Mrs. Gursh was not blind, and braille was her second alphabet, but this did not diminish her fluency and speed with braille. Although Mrs. Gursh’s primary role was to teach, she also spent many hours each week brailling class materials for her students. My school district had a professional braillist on staff, but Mrs. Gursh filled the gaps with all the last-minute worksheets and other assignments that came in each day. From my alphabet books in kindergarten, to my AP calculus and physics equations senior year, Mrs. Gursh worked tirelessly and without complaint so I could have every assignment or exam handed to me at the exact same time as my sighted classmates. She also transcribed the other way, printing my brailled classwork for my teachers until I reached middle school and started typing my work.

I learned many academic skills from Mrs. Gursh, but most of the lessons I remember today were not academic ones.

Mrs. Gursh had strong relationships with the other TVIs in our district. Early in my schooling, she and her colleagues organized field trips for all of the blind students in the district. She pulled me out of class for special cooking and baking lessons. Some of our group meetings even happened at her house. Over two summers during elementary school, she taught at a small day camp that was hosted in our parents’ homes on a rotating basis. My first friendships with other blind children emerged out of these meetups. One of Mrs. Gursh’s other students, an older kid named Ben, became one of my best friends. When I was older, Mrs. Gursh gave me information about the National Federation of the Blind, an organization that now comprises my adult blind community.

Later in elementary school, once I discovered ableism, I began to challenge my teachers who wouldn’t let me participate fully in class activities. The teachers didn’t know what to do with me, so they brought their frustrations to Mrs. Gursh. Whenever she received a complaint about my insubordination, Mrs. Gursh would make me braille up a report explaining what happened. Then, I had to read the report to Mom or Dad, who would sign it. Naturally, at the time I hated these assignments, especially the need to get a parent signature. And, there was probably a disciplinary aspect to the assignments. But, I realize now, Mrs. Gursh probably also used my reports to get my take on what really happened. She wanted all of us, including my parents, to be on the same page. And, I learned that my perspective was important. Most teachers don’t much care about your opinion when you’re ten.

As I got older, Mrs. Gursh would ask me to evaluate my own progress for the reports she brought to my Individualized Education Program (IEP) meetings. She asked me for feedback on her teaching and the goals in my IEP. She went to many professional conferences to stay abreast of the latest teaching methods.

Mrs. Gursh was a kind and humble woman, but she was no pushover. Ben and I would often discuss how she could command authority without ever once raising her voice. When I was little, if I dropped something on the floor, most of the sighted people around would just pick it up for me, but not Mrs. Gursh. She insisted on making me search for the lost item. She also required me to write my spelling words twice, in both contracted and uncontracted braille, so I could spell correctly both in braille and on the computer. It was hard work, but today I don’t have a magic elf picking up things for me, and I type things all the time. I’m glad I didn’t get off easy on those things.

As I matured, Mrs. Gursh made it clear that I would need to become my own advocate. I was gradually assigned to take more responsibility for requesting accessible copies of my course materials. The final formal lesson I received from Mrs. Gursh was all about self-advocacy, and my rights and responsibilities both in high school and in my post-high school future. She told me that in college, “You’ll need a primary way of getting accessible materials, and at least two backups.” That was definitely the truth. And, sadly, I saw many of my blind peers struggle in college because they didn’t have those backup plans.

As my high school graduation approached, Ben warned me that after graduation, I would no longer be allowed to call our teacher “Mrs. Gursh.” She insisted on answering to her first name, “Bonnie.” Ben warned me this would be difficult.

During my final week of high school, Mrs. Gursh gave me a final assignment. I was to email her a letter describing what I liked about her teaching and how I thought she could improve. I wrote her a letter, explaining the many things I liked, as well as my feeling that I wished there had been less emphasis on my social skills training. Mrs. Gursh sent me a thoughtful reply. She explained that she understood my concerns, and that it was challenging to balance the wishes of my parents, my teachers, myself, and the recommendations of professional practice when designing my IEP. She concluded the email: “From Mrs. Gursh; and from now on, Bonnie.” I still tear up when I think about that note.

I saw Bonnie once after my first year of university. Then, we stayed in contact via Facebook. She’s been “Bonnie” for 16 years now. I now serve as associate editor for an academic journal. Just a few months ago, we received a manuscript about professional development for TVIs. In thinking about peer reviewers for the paper, I naturally thought of Bonnie, who now has 40 years of teaching experience. I asked her to review the article. She did, and with her suggestions, the article was revised and ultimately accepted at the journal. I felt like things had come full circle from Bonnie’s first visit with me when I was 5 years old.

Sadly, this story is a rare one for blind children in public schools. Although these children are entitled to receive service from TVIs, most students don’t stay with the same TVI for 13 years. But worse than that, there is a severe shortage of qualified TVIs to meet the demand. Too many TVIs are not skilled enough in braille to teach it adequately. And, even the best teachers are often over-extended with large caseloads, prohibiting the kind of quality interaction that I had with Mrs. Gursh. The behind-the-scenes transcription support I got from Mrs. Gursh is now often delegated to “paraprofessionals,” instructional aides who may have little to no training in blindness. These individuals may not be equipped to support the student’s self-advocacy and independence. The lack of quality TVI support is one reason that many instructional teams find reasons not to teach braille at all to students who have enough sight to get away with reading some print.

I cannot deny that socioeconomic privilege played a role in enabling the strong relationship I had with Mrs. Gursh. The school district had enough resources to give her a manageable caseload and enough time each week for her to attend to all aspects of my education. That doesn’t happen everywhere. But even regardless of resources, a quality teacher can make a real difference in people’s lives. Today, I try to emulate the qualities of patience, humility, and collaborative spirit that I learned by watching Mrs. Gursh. In working with our youth transition program, I try to pass on her high expectations, the value she placed on self-determination and lifelong learning, and the joys of the blind community to the next generation. Thank you to my colleague and my friend, Bonnie.

Disabled Reddit-ers Share: Eight Common Interaction Mistakes, And How to Fix Them

I saw this a few years ago and thought it was broadly informative.

An interesting conversation picked up on Reddit this week when a user posted the following question to people with disabilities: “What is something that we (presumably people without disabilities) do that we think helps, but it really doesn’t?” In just a day, more than 9,000 comments rolled in, and people living with all types of health conditions — from physical disabilities to developmental delays to invisible illnesses — offered a lot of great insight.

If you’re unfamiliar with what it’s like to live with a health condition, you may not even realize when you’re not actually being that helpful. (That’s OK because that’s where we come in). According to Redditors, here are eight common mistakes people make when they’re trying to help:

1. Helping without asking.

“I love when people help me, but please always ask first, and if I say, ‘No thanks, I’ve got it,’ then go on with your day. Or better yet, strike up a conversation!”

“A friend of a friend of mine who [uses a wheelchair] told us how people constantly offer to push her to her destination, and often times go to start push (sic) her along. One person said, ‘I’m helping!’ as he started pushing her in her chair. She yelled back, ‘No, you’re kidnapping!!’ He stopped.”

2. Changing the way you talk.

“A wheelchair doesn’t make someone hard of hearing. Or stupid. Stop acting like it does.”

“I’m hearing impaired (or hard of hearing, as the Deaf community prefers to put it). Do. Not. Yell at top volume, reeeaaaaaallllllly painfully slow. Just like it isn’t going to help a Spanish person understand the English you are speaking, it’s going to make you look real stupid to me… and everyone else we are around. It might work for you with Grandma, but I’m not your granny. Face me so I can read your lips, speak sharp and speak clear and we cool.”

“Don’t bend down to my level to talk to me, I can hear you perfectly well, and it’s incredibly demeaning.”

“I have an autism spectrum disorder… Just talk to me like you would anyone else, and if I need something explained to me, I will ask. It’s that simple.”

3. Saying “But you don’t look [disabled, sick, etc.]”

“‘But you don’t look sick.’ ‘Well you don’t look like a doctor, but that’s just my opinion.’”

“The thing is, people without visible disabilities… often hear ‘But you don’t look sick’ as an excuse for the person saying it to not take the condition seriously or not give proper accommodations. In those cases it’s not a compliment, it’s an accusation. It happens way more often than you’d expect, and since it’s not just annoying but often an obstacle to actually getting the help needed to get on with your life, it gets old fast.”

4. Feeling sorry.

“I don’t want to be pitied for something I can’t do anything about. It makes me feel less human/inferior.”

“Pity is condescending, it ignores a person’s talents, relationships, accomplishments and joys and paints them as nothing more than a thing that suffers.”

5. Offering medical advice.

“My husband has chronic migraines. I can’t tell you the number of times someone suggests f**king Excedrin. ‘Oh really? I’ve lived with migraines for 20 years and I never thought to try over-the-counter Excedrin! Tell me more about how it helped you with a really bad headache once.’”

“Someone told me cashews could cure depression. I… may not have been the most tactful in my response.”

“Believe me, unless you are a researcher who specializes in my condition, you probably don’t know more about treatments than me.”

6. Calling a person “inspiring” or “brave.”

“I laugh when people call me an inspiration. If they only knew. No Hallmark movies to be made about me anytime soon. lol”

“This! I’m being praised for going to university and doing normal random everyday stuff.What am I supposed to do, sit on my ass all day and wait to die?”

“There’s nothing brave or strong about it. I exist. My strength and courage comes from what I do. Not what I am.”

7. Shrugging off an illness you can’t see.

“I have a chronic pain condition. Please don’t tell me it’s all in my head. Everything we experience, we experience through the brain. Of course it’s in my head.”

“Just because someone looks OK to you, doesn’t mean you should treat them like they’re faking it.”

8. Avoiding eye contact or keeping your questions to yourself.

“I have some form of Tourette’s syndrome. I love questions. Questions show concern and interest, and that is (for me at least) infinitely more preferable than awkward tension.”

“I only have one eye. Look, I already know I look different. I understand that your kid is curious. That’s a good thing. Let me answer their questions. They can learn something and find out that I’m still a nice guy even though I look different. Don’t make them feel afraid to talk to people who don’t look exactly like them.”

But remember, everyone is different.

“Many of the things that some people don’t want could likewise be things others might welcome. The point is, everyone is different and has different needs and feelings about their situation in life. My advice is engage in a conversation and ask if there is anything you can do. If the answer is yes, help. If the answer is no, fine. This applies to everyone — not just those people with a clear physical impairment.”

From Our Intern: Top Tips for Planning Accessible Conferences

My name is Lucas Sanders, and this summer I have been working as an intern with DR. Arielle Silverman. When DR. Silverman was hired as a consultant, for the Physics Education Research Conference Planning Committee, I was asked to help research how they could best ensure their conferences are fully accessible for all of their attendees. While helping do research on conference accessibility, I learned a lot about just how much extensive planning goes into creating an accessible conference environment. Below are some of the most important things one should consider when planning an accessible conference.

When planning a conference, one should always attempt to make it as accessible as possible for the convenience of those who will be attending. This may seem rather daunting considering the wide spectrum of different people’s needs and the wide range of disabilities of those who may be attending. This is why the first step, when planning a conference, is to make things as simple as possible and should be to assign someone on the planning committee of the conference, to oversee all matters concerning accessibility. This person is usually called the accessibility chair person, and they have the responsibility of ensuring that all attendees will be equally able to participate. The first thing the accessibility chair person should oversee, is the creation of the registration form, which needs to be accessible to those using screen readers or zoom text. The form should also have a sufficient checklist for people to go through and check off concerning any accommodations they’ll need when attending the conference. Once this is done the accessibility chair person can begin planning for the location of the event, which is one of the most important aspects to consider when thinking about those with special travel needs. The location will need to be easily accessible for those who are unable to drive themselves. This means it should be near an airport for those who are flying in and near bus stops for those who will be using that form of transportation. The event should also be near or in a hotel for the convenience of those who will need to be staying overnight, and are unable to drive themselves. The building itself should also be easily accessible to those in wheelchairs or other physical disabilities.

Once the registration form and the location have been created and determined the next thing to be considered is the formatting of all material that will be presented at the conference. The accessibility chair person should inform all speakers to provide their presentations ahead of time so they can be put in alternate formats. The speakers should also be informed that any and all videos should be captioned and that they should be prepared to give an auditory description of all visual images used threwout their presentation.

These are perhaps the most important things to consider, but there are many more aspects to creating the perfect accessible conference. Such as, providing volunteers to assist people in getting food if food is provided, providing volunteers to read any and all signs or posters, ensuring all seating arrangements are spread out enough that people in wheelchairs will be able to maneuver throughout the room, making sure that there will be enough money in the budget to hire enough interpreters if requested, and correctly labeling all food that is provided, for the benefit of those who may have allergies or dietary restrictions.

 If all these things are properly set up then your conference should go smoothly, but to be properly prepared it’s important to also carefully choose the staff who will be working at the event. It will be a huge benefit if the volunteers and event staff have been properly trained in how to assist those with disabilities as an extra precaution to ensure the satisfaction of all attendees.

Make Real Change on Gun Violence: Stop Scapegoating People with Mental Health Disabilities [Repost]

“Research shows that there is no direct link between gun violence (excluding suicide) and mental health. In fact, people with disabilities of all kinds are more likely to be the victims of gun violence.”

“The evidence is clear: the overwhelming majority of gun violence is committed by people without disabilities. Public opinion, and public policy, must catch up with reality.  Misinformation on this issue contributes to discrimination that has a real and negative impact on people’s lives.”

In the wake of recent mass shootings, Americans are struggling to figure out where to find solutions. All too often, violent crimes are blamed on mental health disabilities. This research brief from the Autistic Self-Advocacy Network (ASAN) demonstrates that attributing a majority of violent crimes to disabled perpetrators is not only inaccurate, but also stigmatizing and harmful to a group who already face a heightened risk of victimization.

Make Real Change on Gun Violence: Stop Scapegoating People with Mental Health Disabilities