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“My name is Brian Miller, and I am totally blind, and I love to travel, to explore, to be in motion. I love the thrill of departure, and the comfort of coming home. I’ve visited more than 65 countries on six continents so far, many of them dozens of times, over several decades.”

“I don’t think of myself as brave, or a risk-taker… But I also like to challenge myself, to deliberately put myself in strange places and force myself to puzzle my way out, or into wherever it is I need or want to go. Problem solving keeps me sharp, and brings me contentment and satisfaction, even as it also brings frustration and annoyance at times.”

“There are more places to visit than one can ever hope to get to in one lifetime. Beyond the mountains are more mountains.”

From Brian’s travel blog

“He was 52 and otherwise healthy. He was a friend to me and beloved by many all over the world. The world is a better place for having had him in it, and it is a poorer place for his absence.”

A friend writing about Brian after his death from COVID-19

“For him, this is yet another adventure, and I can just imagine him right now, sitting on an outdoor beer garden in heaven, turning to his neighbor and saying, ‘you know the interesting thing about heavenly beer is…’

Another friend writing about Brian

 The COVID-19 pandemic has upended our routines, and for many of us, our livelihoods. But the illness may still seem impersonal, that is, until it affects your born or chosen family. Earlier this week, my disabled family lost a vital member, a mentor, leader, scholar, and friend.

Brian was among the first wave of blind chhildren to attend public schools in the United States. He studied political science and history, completing a doctoral dissertation titled “Speaking for Themselves: The Blind Civil Rights Movement and the Battle for the Iowa Braille School” in 2001. But instead of working in academia, he served as a program analyst for the Rehabilitation Services Administration. Besides his passion for travel, he loved good books, good beer, and good company.

I first met Brian when I joined the National Federation of the Blind at the age of 18, but for many years we were mainly email acquaintances. Four years ago, though, Brian came to a brunch with some mutual friends. At the time, my husband and I were considering a move to Washington, DC, and Brian offered to help us get to know the area. Once our move was confirmed, I called Brian several times, overwhelmed by all the options of places to live and an entirely new transit system. Brian helped calm my nerves as he shared his insider knowledge of the area. When we arrived, while we were still living out of our suitcases, Brian invited us over for a dinner party. We had few other friends or family in the area, and it was powerful to feel so welcomed.

One thing that intimidated me most about DC was using the subway. I didn’t grow up around trains, and they had always made me a little nervous. A bus will stop in time if you get too close, or wait for you to board, but trains and subways have less control, plus their loud whistles and locomotives just kind of sound like impending doom. When I asked Brian how a blind person could safely, independently board the metro, he just said, “Oh, it’s no big deal. Just run your cane along the side of the train until you find the door. I do that all the time.” It sounded silly, but sure enough, I tried it and it worked. With his confidence, my fears gradually subsided.

In the hours after his death, my Facebook feed was flooded with similar stories. Friends whom Brian welcomed, mentored, and touched over the years. Tributes to his kindness, his wit and sense of humor, his intelligence, curiosity and adventure. The day after his passing, Brian was featured on the front page of the Washington Post.

Make no mistake, Brian’s death was a tragic loss for our community. But, I find some peace in knowing that his legacy will live on in the lives of everyone he touched, around the world.

“If only people knew what a spectrum is … Because they’re talking about autism all wrong.”

“Red is not ‘more spectrum’ than blue is.”

“All autistic people are affected in one way or another in most or all of these boxes—a rainbow of traits.”

“They think that the stranger we act, the ‘more autistic’ we are. We are asking you to stop. Ask us what we can and cannot do. Even if it doesn’t look as though we can understand.”

April has been branded “Autism Awareness Month” by organizations claiming to speak for autistic people and their families. In recent years, the neurodiversity community has rebranded April as Autism Acceptance Month, prioritizing information from autistic people themselves about the experience of autism.

So, I thought this would be a good time to share the below piece about the autism spectrum. Like many people, I had mistakenly thought of the autism spectrum as a linear gradient from mild to severe autism. But, as C.L. Lynch writes, it’s not that simple. Instead, “the spectrum” is more like a rainbow of traits, occurring in different combinations for every person.

“It’s a Spectrum” Doesn’t Mean What You Think

Back when I was in high school, most of my friends lived across town. We met at a summer and weekend program for blind kids that gathered us from all over the Phoenix valley. Though we hung out in person as much as we could, whether at the program events or at each other’s houses, sometimes we went for weeks without seeing each other, because meeting up often meant negotiating with family members to give us a ride. So, the phone became a lifeline.

On a typical Friday night, I could spend the whole evening chatting with four or five friends (separately or together), without leaving my bedroom. I might come home from school at 3, talk until 6, emerge for dinner and an hour of homework, then get back on the phone again until 11.

All kinds of hilarious and serious conversations were mediated over those telephone wires. We laughed, cried, shouted, flirted, vented anger and sadness and fear. We made up silly languages and watched shows together. Four of us rang in the new millennium together from our own houses, connected by the phone. We read each other articles from Seventeen Magazine. We played games, meditated, listened to music, argued and debated and fought, shared deep dreams for our futures and silly inside jokes in the same call.

I realize now why those phone calls were so important for my mental health. The phone put me on an equal footing with my peers. During audio conversations, everyone is blind. On the phone, there were no silent gestures, no ambiguity about who was talking to whom, nobody running off to play games I couldn’t play. I went to school to learn, but I talked on the phone to socialize and belong in ways that I never experienced at school

For me, the phone was the ultimate equalizer. Of course, for some people, the phone is hugely inaccessible. D/deaf people, people with speech impairments, and many autistic people struggle with phone calls. For these folks, text chatting may offer a similar oasis where the playing field is leveled. Telecommunication, whether oral or written in form, can often help us bypass barriers not only with getting to in-person meetings, but also with in-person communication. And, virtual communication can be a handy way of bringing disabled people together from across the globe.

Twenty years later, I’ve lost interest in phone calls. Like many millennials, I’ve gotten annoyed with voice mail (both sending and receiving) and wish people would just text instead. Sometimes after a long workday of communicating with my various bosses, coworkers, and clients, I’m done with conversation for the day. I’d rather watch a show or read a book or comment on a Facebook post instead of picking up the phone. Twenty years ago, I had no qualms about calling friends, family, even new acquaintances, as long as it was at a reasonable hour. Now, it feels rude to just call somebody without texting first to see if it’s a good time. It’s too easy to let time slip by, and let those old friendships dry up.

During the COVID-19 pandemic, physical meetings are being abandoned in favor of telecommunication. The pandemic has many unfortunate consequences that will disproportionately hit disabled people. But, one small positive is that telecommunication and virtual meetings are becoming mainstream, making it easier for disabled people to interact. As Kathleen Downes put it: “it is that society is finally embracing more than one definition of togetherness… and making joyful, wonderful, much needed outlets for people who can’t leave their homes.” Perhaps we will start to recognize the value of “virtual” encounters and connections. I hope we can keep working toward inclusion and away from isolation even after the pandemic clears. As for me, without so many distractions, maybe I’ll pick up the phone every once in a while.

“Running for president is essentially the biggest stage in the world. For [Biden] to come out and say ‘I still stutter and it’s fine’ would be an amazing, empowering message.”

On the presidential debate stage, one’s verbal fluency can make or break their performance. Joe Biden’s critics might not know of his lifelong stutter. In the following article, a reporter who shares the experience of stuttering offers reflections on the complexities of managing public attitudes about stuttering, common coping strategies, and the challenging decision of whether or not to disclose one’s stutter to others. These complexities affect all aspects of public life, but they become especially complex and salient when one is running for president of the United States.

Joe Biden’s Stutter, and Mine

Today is Rare Disease Day, an internationally designated day to raise awareness of rare diseases. Many disabled people have one or more rare diseases. I thought it would be in the Disability Wisdom spirit to gather feedback from individuals who have rare diseases, in contrast to much of the other content out there that focuses on the views of our family members. I asked people with rare diseases to tell us “what is one thing you wish people knew about your rare disease?” Here are the replies. For people who consented, I also included a link to their Facebook profile, so that if you or someone you know has the same rare disease, you can connect with them.

• I have Achromatopsia. Most eye doctors have never heard of this, much less treated a patient with it. I would like for them to be honest and ask questions if they have never heard [of] or treated anyone with this rare condition, instead of trying to put it with other eye diseases. Nicole D Fincham-Shehan
• I would like to tell people that nori disease can be inconvenient at times, but it is not the end of the World. I live a fulfilling life and I just have to do things differently. All of the experiences I have had have been priceless and I wouldn’t change the way I am for anything. Mary Church
• I have trigeminal neuralgia. I would say the thing I want people to know the most is that sometimes extreme pain is invisible and you don’t always know what someone is going through sometimes if they seem tired or withdrawn it’s really because they’re dealing with pain, otherwise if they takeoff sick but they don’t really seem sick that much might be because of a real reason. So often I have to cancel or seem withdrawn or sometimes I even have to take off work last minute or leave early and some people will think that I don’t look or sound sick but it’s really because I’m having a bad pain day I just want people to understand that sometimes because you don’t look sick doesn’t mean that you’re not going through a lot of pain.-Anonymous
• I have undiagnosed neurological vision impairment. I want people to know that it’s real; I’m not faking it or making it up. It’s just that brain research hasn’t gotten there yet.-Anonymous
• Imagine that normal every day sounds such as: people talking and laughing, telephone ringing, dishes clanking, Music or TV,  lawnmowers, running water, refrigerators, etc cause you physical pain, that lingers long after the sound. Most doctors do not even believe you that you are in real physical pain and think that it is psychosomatic or all in your head, and the few doctors who do believe you still think you need to desensitize yourself, which only worsens your pain therefore increasing your sensitivity. This is what life is like for people who suffer from Hyperacusis with pain, a rare, debilitating, and poorly understood medical condition. Hyperacusis Awareness
• As someone who may very well be the only person with a documented case of my genetic mutation and combination of 2 rare diseases, I’m used to having med students and residents brought into my medical appointments, and as long as I’m not relegated to being a fascinating science experiment I am all for that education. But in public please do not ask me what’s wrong with me, or why my eyes are like that, etc. It’s just rude and invasive to ask what my medical history is, but people excuse that because they just pass it off as curiosity.-Anonymous
• Though I have many chronic health conditions, systemic Scleroderma is an auto-immune disease I have that’s changed my life in unexpected ways; ways in which quite frankly, I’d never want anyone to go through. So when I open up and share my experiences with this or any other medical issue, trust that I’m telling the truth. The things I am saying may not be like anything you’ve ever seen or experienced, but ultimately, I am the expert on my body; not a doctor or other medical professional…but ME! Chelsea Munoz