A New Chapter (Or Chapters)

If you haven’t forgotten about me yet, you may have noticed I haven’t blogged in a while. Don’t worry, I’m still alive and kicking. I’ve just been busy.

On September 7, 2021, I started a new job as the research specialist at the American Foundation for the Blind. I’ve also continued working part-time with the NFB of Virginia, supporting our wonderful Project RISE youth mentoring program. It’s taken me some time to figure out how to juggle my new roles.

However, though I haven’t been blogging, you’ll soon have the opportunity to enjoy a really long blog post of mine, i.e. a book!

On November 15, I will be releasing my memoir, titled Just Human: The Quest for Disability Wisdom, Respect, and Inclusion. It’ll be available on Amazon (paperback and Kindle) and as an accessible document via direct purchase.

I started building this book by considering events from my life, many that I’ve already shared here, such as that time I licked my grandparents’ dog, and that time I slacked on my algebra final. I tell the stories, and then I reflect on the lessons and implications for the Disability Wisdom philosophy, and for society more generally. Within each of the 18 chapters, you’ll read a story, and you’ll also learn about relevant disability history, research, and receive a call to action.

In the summer and fall of 2020, as I sat in my home office sheltering from COVID, hearing about police brutality, racism and political unrest, I wrote the final chapters of this book with my mind on the younger generations. There, the story shifts from my own storytelling to a presentation of practical things we can all do to make life better for them, and for ourselves.

Truthfully, I don’t expect to get rich from this book. I might not even recoup my initial investment. But I want it to get into the hands of disabled young people, parents, educators, employers, policymakers, and everyone else who has the power to make the world more inclusive. If even one young person reads my book and comes away understanding they are “good, whole, and have infinite human worth,” it’ll be a win. If even one parent reads my book and gains hope and strength around their child’s new disability diagnosis, or if even one educator reads my book and transitions from punitive methods to collaborative solutions when working with a “behaviorally challenging” student, it’ll be a win.

I’m asking for your help making these wins happen. Here’s how you can help:

  • If you’re on Facebook, join my book’s Facebook group to get updates on the book launch.
  • On November 15, purchase my book using the Amazon link (coming soon) or email me at arielle@disabilitywisdom.com for a direct copy.
  • If you like the book, consider posting a review on Amazon.
  • Share the book information with people you know, especially professionals in the disability field, parents of disabled kids, and disabled young adults.
  • Suggest it as material for your book club or reading group, if you belong to one.

I appreciate your support and look forward to sending more updates soon!

Blind Just Is [Repost]

Picture of Alysa Chadow
Picture of Alysa Chadow

This week’s post comes from Alysa Chadow. Alysa Chadow was born and raised in New York, and has taught the blind and visually impaired at all grade levels in both New York and California. This tale about Alysa’s first guide dog is just one of the stories she has been writing since her retiring from the California School for the Blind in 2017, where she spent 18 years as a classroom teacher. In addition to her background in Special Education, she has taught Anthropology and English. She lives with her third guide dog Carmel, a black lab-Golden Retriever mix, and her partner Brian, a retired Civil Engineer.

  Sometimes, fitting in can be a real challenge.

  I’ve been visually impaired since 16, when a brain tumor damaged my optic nerve. I can see some from my right eye, and none from my left. I used a cane for years, and received both good and bad attention. I decided that having a guide dog would help me blend in. I hoped that the $30,000 spent breeding, raising, and training a dog would do that.

  In 1998 I received Patsy, a Yellow Labrador Retriever. She was an excellent guide dog who took me anywhere I needed to go and stayed focused while doing that, except for the times she shoplifted.

  First, there was the candy rack caper at my local drug store. Guide dogs are trained to walk on their handler’s left side. I have no vision on my left side. Of course, the candy rack was on my left side. Patsy darted for it, and I gave her a strong leash correction. I made my purchase, praised her, and made ready to leave the store. That was when I noticed a large Nestle’s Crunch bar sticking out of her mouth. I snatched it from her, tossed it onto a nearby check-out stand, and fled as fast as our six feet could carry us.

  The local bakery had baskets with bread in them, the lowest level with Patsy’s head. Often, I had to pull her away from the basket while shopping. I got pretty good at it, too. One day after leaving the bakery, I decided to tell Patsy what a good girl she’d been. She looked at me, tail wagging, a huge Kaiser roll protruding from her mouth. People walking past must have seen the roll. I wanted the sidewalk to open up and swallow me, but all I could do was grab that cursed Kaiser roll and throw it at a tree. That was her first bakery heist.

  In the second, we were in the grocery store when I busted her. I caught her when I squatted to reach my favorite tea. Imagine the stock clerk’s surprise when finding a soggy Kaiser roll among the boxes of Oolong and Earl Gray.

  Suddenly her shoplifting spree stopped. Patsy’s criminal career was over, and we went about our business blissfully blending in.  Life was beautiful!

  One day, while walking home, Patsy lunged to the left, my blind side. I gave her a strong leash correction, then moved on, satisfied that I had done my job controlling my girl. People passed us, broad smiles on their faces. No doubt they were marveling at what a great dog Patsy was. Now that was the kind of attention I could live with.

  We passed someone with a dog. Typically, Patsy would leap at it like a giant salmon. She didn’t. What a good dog!

  At a street crossing, a young man on a bicycle pulled up beside us. I could tell he was friendly, and about to complement me on my dog. I could hardly wait!

  “Excuse me Miss. Do you know your dog has a piece of pizza in her mouth?”

  I stared at Patsy, who looked at me, a huge slice of cheese pizza dangling from her jaws.

  That was why she lunged. That was why people smiled. That was why she ignored the dog. Thirty thousand dollars’ worth of training undone by a $3 slice of pizza.

  “Patsy!” I said, trying to keep murderous thoughts at bay. “Give me that!” and snatched it from the mouth of my highly trained dog.

  “I’ll throw that away for you, Miss.”

  “Thank you.” Just the kind of attention I wanted.

  We walked the last blocks home without incident…thank God. It was time for Patsy’s dinner, and feeding her took my mind off that stinking slice of pizza.

  It was my routine to groom Patsy after her dinner. “Patsy, sit.” She obeyed, and then half closed her dark brown eyes as I ran a brush through her thick yellow coat.   Suddenly, something occurred to me. Yes, Patsy snagged a piece of pizza. Yes, she attracted unwanted attention. Yes, she made me feel different.

  But mostly, she guided me perfectly across streets, on and off buses, in and out of stores. She made me feel like anyone else. She made me feel in control. She made me feel safe. The value of that was a small price to pay for being a patsy.

Where Were You Thirty-one Years Ago?

Where were you on July 26, 1990, when the Americans with Disabilities Act (ADA) was signed into law?

When it happened, I was 5 years old, and just beginning to consolidate long-term memory. I was just beginning to understand and retain time as a continuous flow, rather than retaining brief, disjointed clips of experience.

I don’t know what I was doing on July 26. I know it fell a few weeks after I moved into my sister’s bedroom with her (her idea) and shortly before our first cross-country family vacation I can remember, going to Maine to visit my aunt and uncle. It fell almost exactly a month before I started kindergarten at the local public school.

I wonder if my parents were aware of the ADA’s signing or of any of the activities that led up to it in the preceding months. If they were, it was unlikely they discussed it with me then, nor would I have understood what it meant. At the age of 5, I didn’t know what a disability was, nor that I had one. I barely knew what the word “blind” meant at that point. I had not yet been told that I couldn’t play ball with the other girls or sit with my friends outside the “handicapped” seats on the school bus. I had no concept yet of being different from almost everyone around me, and I automatically assumed that if my peers got to do something, I got to do it, too. It would take several more years of life experience before I could really appreciate what it meant to be part of a “protected class.”

Those of us in the “ADA generation” perhaps grew up taking for granted that we have a right to access. It may be hard for us to believe that there was a time not too long ago when our right to access places of business, employment, education, and other amenities was not guaranteed. At the same time, though, legislation has not guaranteed the implementation of access. Many of us still face the same exclusion, at least occasionally and sometimes often, that the law was meant to prevent.

I’m not sure when I first learned about the ADA. It was probably in high school, when my Teacher of the Visually Impaired (TVI) went out of her way to teach me about the various laws that protected my educational rights. Most disabled students never receive explicit instruction on their legal rights. Nor is the history of the disability rights movement taught in high school or undergraduate-level history classes. It’s usually only found in specialized books or advanced courses on the topic.

I wonder if the current generation of disabled children are learning about their legal rights. Kids are hearing about other equity issues, such as the inclusion of people with LGBT identities, younger than I did. I wonder how it might have felt to find out what my disabled elders had done to secure my rights. Maybe not at age 5 when the ADA was first passed, but when I was 8 or 10 or 12 years old, and starting to ask the tough questions. It might have been comforting and refreshing to know that, even though the majority of people viewed me as different, there were laws on the books affirming my right to fully participate in the community.

On the 31st anniversary of the ADA, we celebrate. We also bemoan all the work that still needs to be done to fulfill the spirit of the law. As part of that ongoing work, may we consider how we can make “disability history” more mainstream, how we can educate and empower the next generation of disabled people to continue the labor toward equality. I dream there may come a day when laws like the ADA are no longer necessary, because it will just be commonly accepted that all bodies and minds equally belong.

Disability Employment: Challenges, Strategies, and Opportunities

A few weeks ago, I was interviewed on the LVB podcast about disability employment issues, particularly focused on blindness. From the adolescent looking for their first job, to an older adult returning to the workforce or training for a new career, navigating employment as a disabled person presents a variety of challenges, but also opportunities.

Note: The interview includes automatic closed captions. If you’d like a full transcript of the interview, email arielle@disabilitywisdom.com.

Watch the interview here

Living with Invisible Disabilities [Guest post]

“So if you encounter someone with an invisible disability please have compassion, patience, empathy and be understanding when we may say or do things that don’t seem ‘normal’ or we need alone time to rest or cannot work as much as some people because of our disability. We’re just trying to find a place in the world that wasn’t built for us.”

This week’s post comes from Amy J, a disability, mental health and social justice advocate who lives and works in the San Francisco Bay Area.

I was in my mid-30s when I was diagnosed with depression and anxiety. My other diagnosis was changed from schizoaffective disorder to autism spectrum disorder recently at the age of 41. I’ve always known I was different and never quite fit in.

As a child, I cried a lot for no good reason. I would much rather make color charts, read or line up my stuffed animals than play outside like my brothers and sister. A bully would single me out on the playground because I was alone. I didn’t like going to elementary school and would fake illness to get out of it. I’m sure this harmed my ability to socialize and ability to learn the rules of being a neurotypical child. I didn’t exactly have good role models at home where I can learn such skills. I’m pretty sure my dad is autistic because he has communication issues and issues expressing his anger. My niece also got diagnosed at 14.

As a teen, I was a pretty quiet kid. I would connect with others based on their music interests and always had different friends every year. I spent a lot of time in my room, alone listening to my favorite radio station and collecting magazines, articles and fan club memorabilia related to my favorite bands. Music is one of my special interests because it won’t leave me like people tend to do. Other ways I connected with others was my love of The Peanuts Gang. People I barely knew would give me things with Snoopy on it that I amassed a large collection.

College was where I started to make real friends and as an adult, I finally started to figure things out socially, although I have been called abrasive, abrupt, blunt and direct because sometimes in large groups I would interrupt trying to hear multiple conversations or be overloaded with so much going on I would shut down. I tend to not be able to read people’s emotions or read a room very well where I offended people unknowingly that friends would drop me because of something I said or did. (They also didn’t communicate this to me or I would’ve tried to rectify this behavior). Now I ask people to let me know if I’ve said or done something offensive so I can correct it or apologize and try to make it a habit to do better. Neurotypicals want us to read between the lines when many of us are incapable of that. Just like Brene Brown says, “Clear is kind.” Most offenses are really just misunderstandings and I just want to be understood. These are all common characteristics of women with autism but since they’re so subtle we’re usually just put in the weird or different bucket.

Finding and keeping a job was always tough for me. While I was great at communicating with the written word, my lack of small talk and getting down to business right away didn’t exactly put me on the list for promotions. I was fired from several jobs or other jobs would cause me to burn out or bore me to tears. While my other friends were moving up in their positions and earning more money, it was stagnant for me. It wasn’t until I was under an enormous amount of stress that led me to have a really bad psychotic break that led me to intense therapy and a diagnosis of major depression with psychotic features and generalized anxiety that the pieces started to fit.

After speaking more to my therapist about my communication issues, unstable relationships and hard time with empathy, I thought I might’ve had borderline personality disorder or even narcissistic personality disorder. He recommended I get re-evaluated and after a long waiting period, I took a five hour test and more waiting for results, I finally had a diagnosis – autism spectrum disorder. Since most testing is geared toward boys, girls often get misdiagnosed or diagnosed later in life. I didn’t even think of this as a diagnosis but the more research I did and the more people I talk to who have it, it makes sense. I finally have found my tribe.

While many people think I don’t have it because I’m mostly neurotypical passing, and they’ve never seen me have a meltdown or my form of stimming which is plucking my eyebrows. My communication skills have always needed work especially when it comes to navigating conflict and it has taken me well into adulthood to finally find and understand real friendship. Thank goodness for Dialectical Behavioral Therapy (DBT) which has saved me in more than a few occasions. I’m still learning everyday how to do better. I wish I had known about my issues sooner so I don’t feel like I have missed out so much in life. Some may not want or need an actual diagnosis but for me it was freeing to know that I wasn’t damaged or the only one struggling with my issues. I finally understood why I struggled in areas most people don’t think twice about.

So if you encounter someone with an invisible disability please have compassion, patience, empathy and be understanding when we may say or do things that don’t seem “normal” or we need alone time to rest or cannot work as much as some people because of our disability. We’re just trying to find a place in the world that wasn’t built for us. If you really want to be an ally, follow influencers with different disabilities and of course listen to us and treat us with the same kindness and dignity you would with someone without a disability. Remember we’re different, not less and there’s nothing about us without us.

If you want to chat or connect, send me an email theycallmeamy007@gmail.com