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

“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

A Tribute to the Telephone

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.

What Joe Biden Can’t Bring Himself to Say [Repost]

“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

Bonus Post! On Rare Disease Day, People with Rare Diseases Speak Up

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

My LCA Story [Guest post]

“Perhaps I would have realized, at age twenty rather than at age thirty, that it’s possible to want sight, without devaluing the blind community and myself. My hope would have blossomed just as vibrantly, but it would have sprung mostly from wonder rather than fear, and that would have made all the difference.”

Picture of Tasha Chemel

 On my last post, I wrote about research on blind people’s attitudes toward gene editing. This week, I want to share a particularly complex perspective on blindness and gene therapy. Tasha wants to see someday, but not for the reasons you might think. She also gives us a critical look at the rhetoric espoused by some treatment-focused organizations, and how they can describe treatment as a path to self-actualization rather than a fix for something broken. Her story is long, but I urge you to read to the end. Here is what she says:

I was born in Johannesburg, South Africa, on October 2, 1985. At the time of my birth, doctors didn’t notice anything wrong with my eyes, but by age four months, when I wasn’t meeting developmental milestones, my parents became worried. They began the grueling process of taking me to doctor’s offices all over South Africa. Despite the testing, the doctors couldn’t come to any sort of definitive conclusions about what my disability was. Some of them believed I had brain damage and would never read or write or live independently, while others thought I would simply need glasses. My parents became more and more discouraged.

It was only after we emigrated to the United States that I received the correct diagnosis of LCA. As a child, I struggled with the abacus, orientation and mobility, and had mixed feelings about my cane, but was otherwise pretty happy. As I grew older and classmates became less accepting, my feelings towards blindness began to change. I often said that my blindness was an administrative error, meaning that I wasn’t supposed to be blind. Mobility lessons became even more of a challenge, although I was privileged to have access to high-quality training. My mobility teacher was stumped by my inability to form mental maps of space and walk in a straight line. I would sometimes check out of mobility lessons, math class, or other tasks that were spatially challenging, and my teachers lectured me for my disorganization and bad attitude. The word “independence” came to symbolize all my shortcomings—everything I was not able to do to be a “good blind person.”

When I was first diagnosed, my mom read a quote from a book to the effect of “Blindness isn’t the true disability. A lack of independence is.” Since that moment, she did everything in her power to ensure that I would be a happy, successful blind person who accepted herself. My father, on the other hand, was acutely aware of my pain and believed that sight would ease it. So my parents presented me with two extreme views of blindness, one centering on cure, and one on acceptance, when in retrospect, what I probably needed was something in the middle.

I fully embraced my dad’s views about blindness, while fighting my mom all the way. On Sunday afternoons, my dad and I would lie on my bed and read articles from the Foundation Fighting Blindness newsletter. LCA genes hadn’t been discovered yet, but the scientists were still optimistic that a treatment would be on the near horizon. I remember the thrill that would course through me every time we read those articles. I imagined a different me: a me who wore cool clothes and who sat with the popular girls at lunch. Unlike my mother, my father didn’t really see how these things would be possible for me as a blind person. My dad’s fear for me heightened my own fear for myself, and together we created a fertile place for hope to grow.

Once, when I was about ten, someone from the Foundation came to our house to talk to us about advances in genetic research. He said that when treatments first came out, they’d be very expensive. Later, I asked my dad if we could afford them. “I’d sell the house to pay for it if I had too, Babyshoes,” he answered.

When I was sixteen, my father died of leukemia. I had not only lost a father, but an ally in the fight against blindness. I attended rehabilitation programs at the Carroll Center, where I often received the message that I wasn’t trying hard and that I would never be a productive, independent blind adult. My paraprofessionals and vision teacher echoed these sentiments. In contrast, my high school teachers were unsure of how to treat me: was I the AP student or the special education student? What was their responsibility as teachers, and what was not? I became angry at many of the adults in my life, but my anger most often turned inward. The conversations I had with my mom about self-acceptance, though extremely well-intentioned, were of little comfort. I missed those long chats with my dad, those tales of my future escape from my sworn enemy, blindness.

In college, my desire to separate from blindness only grew. My mom is an artist, and I mourned because I couldn’t fully appreciate her art, and my own inability to consistently use visual imagery in my writing. In the meantime, LCA genes were being discovered by Robert Koenekoop and other scientists. The prospect of a cure was becoming more of a reality. In graduate school, I decided to pursue genetic testing. After a couple of false starts and a lot of phone calls, during which my grief for my dad intensified, I finally received a diagnosis of LCA5. I was elated; on the ride to writing group with my friend, Dan, I could hardly speak. I felt like my whole reality had shifted. I spoke to David Brint, then the president of the Foundation for Retinal Research, and was told that clinical trials for LCA might start as soon as a year and a half from then. For months afterwards, when I was studying for one of my classes, or lying in bed at night, or on the treadmill at the gym, I played out elaborate mind movies where I had become fully sighted. My mom was buying me a car. I picked up my sister at the airport and brought groceries home. I painted. The present moment faded into the background; the mind movies were just too dazzling.

Unfortunately, I was in for several rude awakenings. After receiving extensive testing at Mass Eye and Ear, I was told that I might not be a candidate for gene therapy because my retinas had deteriorated too much. Friends cautioned me that even if I did develop sight, my brain might not know how to process the visual information. And, the promised clinical trial didn’t materialize in a year and a half. Or three years. Or five. Still, my hope continued to grow. When a treatment was merely theoretical, when my thoughts about it were mostly limited to those Sunday afternoon conversations with my dad, my hope was like a flowering plant, contained to its own pot.  But as the years past, and my frustration and fear increased, it became an invasive species—something unmanageable, something that began to impinge on other aspects of my life.

In 2014, I returned to graduate school, this time to study education. Five years earlier, I had discovered that marijuana gave me some access to light perception, which fueled my desire for sight even more. At Harvard, I shared these experiences with my roommates and friends and gradually began to understand that what the marijuana was truly giving me was a rich, three-dimensional picture of space, something I had always lacked. This explained why tasks ranging from navigating a classroom to laying out ingredients on a table had been so frustrating for me while growing up. The marijuana also gave me some exposure to light and color, sensations that I found endlessly intriguing. I had always had a difficult time having aesthetic experiences through sound, and to a lesser extent, through touch. Visual art always makes more sense to me than music. What I eventually realized was that blindness wasn’t the problem. The problem was how my particular neurology interacted with it. Vision would in fact be helpful for me, but it wouldn’t be fixing something that was broken, as my dad and the person from the Foundation had led me to believe. Rather, it would allow me to be more of who I already was.

Mine is not the classic story of a person learning to accept her blindness. I am still a congenitally blind person who does want sight, but it’s not because having sight is inherently better than not having it. In other words, my desire for sight doesn’t stem from a fear of blindness. Organizations like Sofia Sees Hope and Foundation Fighting Blindness depend on fear to generate hope, but that’s not the only way. In my professional work as a therapist and now as an academic coach, I teach my students to be curious about themselves and what they want, to question their assumptions. What would have happened if, instead of getting sucked into the fear narrative, the belief that sighted is always better, my dad had simply asked me, “Why do you want to see?” If the people in my life had been more curious about this question, perhaps my undiagnosed spatial disabilities would have surfaced earlier. Perhaps I would have realized, at age twenty rather than at age thirty, that it’s possible to want sight, without devaluing the blind community and myself. My hope would have blossomed just as vibrantly, but it would have sprung mostly from wonder rather than fear, and that would have made all the difference.