How will the post-pandemic world deal with disability?

The most pressing questions for people who are living with the current pandemic are when to raise capacity limits. When mask requirements should be reduced. Family, friends, and strangers should be able to reconnect across family lines. When. Millions of people are asking the same question. It is not clear if there will ever be an opening. If they will be accepted as participants. They will be included in the post-pandemic social relationships. These people can feel isolated in a world that is completely open to them. People like me. Advertisement My disability was visible long before the pandemic and the social world became less open to it. My life was vibrant and I could not imagine my life without the social barriers that were associated with being labeled strange. Parts of reopening won't be much different from lockdown. In fact, some aspects of our social life will be more difficult in the open. Unless there is something else. Advertisement Advertisement I was eight years old when the first symptoms appeared. I was 8 years old when my family went to the U.K. and I was given the grim, depressing instruction to write thank you notes for gifts. That was something I didn't care about. Fine. Not fine. These are not supposed to be homework assignments or gifts. I did very little homework. Advertisement This time, I couldn't write the notes. After feeling no limits to my life, I suddenly found that I couldn't move my right hand in the usual ways to transfer thoughts from my mind to paper and page. I was unable to maintain the required postures and angles in order to write legibly. All other things were normal. The handwriting was the only thing that had changed. There was much more to this localized manifestation of physical limitation. It was not just about what was happening in my brain. I also had to consider what would happen to other parts and, perhaps most importantly, how the social world would handle me. Lockdown was about avoiding the stares and giggles of strangers who are captivated by unfamiliar movements. The neurologists at home eventually diagnosed me with dystonia. This is a group of neuromuscular conditions that affect movement. One form of Parkinson's disease can include dystonia. The yips seen in athletes is another. Musicians have dystonia. My movements look something like these, with involuntary twists and tremors that can impede fine motor skills as well as walking. My brand is unique. I have DYT-1 Dystonia. This is a condition that results in the deletion of a small number of nucleotide bases pairs from the billions of human DNA. Advertisement Advertisement This mutation was first discovered in the 1990s. There have been many treatments, including injections, afterpills and brain implants. There is no cure. In the U.S., less than 100,000 people are DYT-1 positive and less than half of those are symptomatic. These gaps between symptoms and genes should be clear: Targeting genes in humans is not the same thing as solving human problems. But from one angle, the problem is in my head. My brain fires neurons repeatedly without any good reason. It's as though I was in an endlessly imagined combat zone. My body is actually in a low-grade conflict with itself. The muscles that I control try to stabilize the ones that aren't, to do simple manual tasks. This sentence was written, for instance, using my right hand as a grip to guide my left hand around my keyboard. Advertisement Contrary to popular belief, I find that the movements don't hurt and can often be at peace. The movement disappears when I go to sleep. Although I have to adapt as the patterns of my involuntary movements change, the physical challenges don't always increase. Because I am a tireless worker, the pain is always there. I'm not completely shut down. I take short bike rides and walk along the banks with my son. Advertisement My work as a lawyer and professor revolves around ideas, and the technology for these technologies has never been more accessible for everyone. Nowadays, I can issue verbal commands to my devices almost as often as I punch keys. And movement doesn't hinder my pondering. I tend to think less about dystonia than most people imagine. I think about Supreme Court cases or data collection. Or whether I will ever see Joan Jett live. Or anything else. Advertisement Surprisingly, my situation also makes staying at home orders possible, perhaps even a relief. Respecting those rules reduced mobility and visibility. Lockdown was my work. It meant that I could research, write, and teach from my home, without having to commute by subway. Videoconferencing gave me greater control over the physical environment as well as the visual framework for social interaction. This allowed me to direct my audiences towards the message I wanted. Instead of distracting them with movements and postures, videoconferencing gave me more control over the physical environment. Although it was difficult for our son to learn online, there were worse outcomes than sitting in a virtual faculty meeting listening to the sounds of an 11 year old practicing "Smells Like Teen Spirit." Advertisement It's not like that. Regardless of my personal priorities and advantages, street-level observers see only disability. Lockdown was a way to avoid the stares, giggles and unsettling sidelong glances from strangers who are captivated by unfamiliar movement. Shelter-in-place isn't as bad as the alternative, which includes an amateur videographer who narrates your mobility impairment while walking down West 4th Street. This kind of exposure is lost when you move online. 100 people have viewed me online over the past year. Advertisement Societically, we shouldn't prefer lockdowns. They have slammed most families financially while instigating widespread social recession. Online life is not accessible to everyone. This is not a technical issue. Although there are many digital affinity groups, even though they seem endless in theory, the rigid interfaces of many apps will keep out people with non-standard sensory, motor and cognitive characteristics. If websites don't contain readable content, automated screen readers won't work. We should at least be aware that reopening could have unbalanced effects on different populations. If reopening means returning pre-pandemic norm, we need to know this. Depending on who you are, lockdown life can be partially open while normal life can be partly closed. All the exposure burdens will be removed if normal is restored. Every unwanted glance in pre-pandemic times was a sign that larger social challengeswere present. Advertisement Advertisement Advertisement For people with disabilities, self-help will likely become more futile due to the social challenges. Consider adaptation and concealment as my main strategies in childhood. To overcome physical obstacles and avoid detection by my peers, I changed my behavior to fit the constraints of felt. I was concerned that exposure would stop me from growing my social circle. Or it could contract. I wasn't really pursuing popularity; as a child, horror-film zombies were part of mainstream culture. Michael J. says that I was anticipating the reactions of others to any bizarre motion. Fox describes it. After it became difficult for me to write with my right hand and to throw with my left, I switched to being left-handed. Later, I had to switch sides. My walking ability was severely impaired at the age of 12, but I never had any problems running, walking slowly or going backwards. These were the things I did in school, as well as my cross-country and tennis running. This was obvious, as suburban teens aren't known for their tolerance. However, I often found it funny or eccentric. Advertisement In my quest to be normal, I became obsessed about sightlines. I was constantly scanning the surrounding environment to see who could see what, and then adjusted my position accordingly. Sometimes I would stop, lag behind a little, or veer briefly, and then step back to keep visual obstacles between my group members and my stray movement. It was an emotionally taxing and cognitively demanding obstacle course that required me to travel from one classroom into another. I had no chance of succeeding beyond partial obscurity. Depending on who you are, lockdown life can be partially open while normal life can be closed. Hide was a strategy that had no future. My movements would be too obvious to hide from the outside world, which is why my surroundings are so observant. The unorthodox parts of my personality were exposed by today's surveillance technology. This experience is becoming more common, lockdown or no. As our digital files grow, the potential for accidental exposure to atypical traits will increase. The social world's challenges will become more difficult to manage with onlookers, often acting on carelessness and caring. Advertisement My grade school teachers noticed that I had difficulty writing and sent me to special education for remedial reading. Two years later, special education instruction was given to me in a coat closet. Although I now realize that I was supposed to be offended by this, the reality is that it wasn't as bad as it appeared. It was first of all a large closet. The training was very useful. A typing class with a 1:1 student-teacher ratio was held. It was led by an attentive, humane, and determined instructor. It's almost perfect. The school attempted klieg light level publicity after miscategorizations and separations. In sixth grade, I was asked to host a forum about my neurological condition. This included a Q&A session and treatment options. Although our teacher was kind and thoughtful, it was 1980s, and there was no integrated curriculum for diversity and inclusion at the school. However, abrupt and staged conversations about disability can backfire. My personal experience was that I tried to go undercover. A kind classmate of mine asked me a follow-up question about drug treatment when we began middle school in the autumn. I laughed at her question in front our friends as if she didn't understand what I was talking about. She was stunned. Advertisement Advertisement Despite the failure of normalization attempts, I was more aware than I realized that my school was smarter than I thought. These teachers were right about which problems to target because the most enduring challenges for me and many others are both social and physical. People's reactions to disability can be incredibly isolating. Loneliness cannot be overcome by oneself. Lockdowns can have very negative consequences if officials don't pay attention to people who think or move differently. Think about the impact school closings have on 7 million students with special education plans. Many of these students found that formal education was not available anymore. It is also true that you can open your world physically, but not socially. This type of closure is a great addition to any other disadvantage. Advertisement Perhaps the experience is familiar to people who have taken steps to limit viral spread. Despite all our social media and devices, the physical distance often came with feelings of isolation, stress, or stagnation. The doomscrolling only made the interpersonal distances worse. The gap could not be bridged by the thousandth Zoom meeting. The gap was cut in half. Imagine that this experience would last a lifetime. Even if you only partially adapt, it is almost certain that you will not experience any real loss. Advertisement Many aspects of life, despite limitations, can be successful. Fortune provided me with the necessary skills, technology, as well as other resources, to pursue education and work. After advances in machine learning, speech recognition software made it possible to increase my unearned luck. I was able to participate in a presidential campaign, Harvard Law School where Laurence Tribe taught me and I graduated at the top of my class. I also won a lawsuit against tobacco companies. I also attended the chambers of John Paul Stevens back when the idea of a disabled Supreme Court clerk was almost unheard of. I also held professorships at NYU Law and the University of Chicago. Advertisement One theory is that I am not disabled in any one of these areas. Maybe in one important aspect. It is possible to see disability as a type of disadvantage rather than as an arbitrarily highlighted personal trait. If it is there, it is relational. There is a limit to how welcoming existing systems can be to coded weird people. People still ridicule, blame, fixate, grab, minimize or ignore me to this day. Sometimes a server will ask my spouse what he would like to order. Sometimes a doctor may think my only medical need is dystonia. Sometimes, a professor assumes that I am a student. Sometimes, a student thinks Im more pretentious than professorial. This might be true. Advertisement Advertisement Advertisement This treatment is more bearable if you have other benefits. Many people don't. The benefits are reduced if social isolation is a daily reality. If I was unwilling to engage with others, despite the risks, and, most importantly, if others were unwilling to interact as equals with me, my professional efforts wouldn't have been much of a benefit. Comprehensive well-being goes beyond the realm of health care, economic security, or physical safety. It must. The extended foundations are interactive. Adrienne Asch, a disability theorist, understood that progress for people with disabilities depends on initiatives that complement existing anti-discrimination laws. These laws tend to emphasize basic access rights and commercial transactions, which are both necessary. However, neither law guarantees humane relationships. It is possible to eliminate all the (shockingly large!) employment disparities that were left unaffected by the Americans With Disabilities Act but still fail create the social structures that allow for vital human interaction. We should already know what progress looks like, regardless of the policy and legal details. Advertisement First, it is common for early relationships to have large effects. My parents were a social worker and I also had a father who was a professor, a brother who was tech-savvy, and a mother who was a social worker. These relationships were built on life beyond disability. I was offered my first job after college by a friend who gave the impression that we were all one big deal. My son, on the other hand, grew up knowing my movements. No one is more comfortable around me than I am, most likely including me. Before mainstream disability categorizations take root, it is possible to have close relationships. Advertisement People need to have open channels for new contacts, especially for those with no early advantages. This can be as simple as support for similar communities. Consider the strength of Deaf culture which is based on a visual language, not a disability. You may also find others with exceptional abilities for love and respect. It was difficult for me to make friends in adulthood, but I found the kind and compassionate person I married without any plans or cover. Her aesthetic sensibility allowed for the unexpected. She was a visual artist who paused in the Midwest between Mexico, New York. People don't worry that atypical partners might be dependent or fragile. These might be us. Advertisement A third and more controversial option is to do inward-looking work with persons with disabilities. To a population that is disadvantaged, this might seem an unreasonable request. It is not the purpose of the disability rights message to force people with disabilities to do difficult self-reflection in order to improve their social life. Acceptance from others should not come at the cost of identity. Relationships are not always one-sided. To be at ease with my limitations and to realize that I don't need to fix myself physically in order to help others professionally, it took reflection. Although dystonia is not something I often discuss, it's not the least interesting aspect of me. It is not my job to make people feel comfortable around me. I'm busy. Advertisement Advertisement Advertisement However, I've learned that opening remarks about disability can help to improve working relationships. One colleague told me she could feel the tension leaving her body when I explained dystonia to her. It was even easier to answer questions. When people ask me about disability, I find it easy and hopefully comforting. Some people respond differently to questions. In my 20s, I sometimes reacted with a "here-we-go again" attitude. I have enjoyed the chance to explain for many years and realized that just a few words can make a big difference in calming. Too often, disability conversations are hampered by anxiety and old conventions about asking questions and telling a problem. This is something Lior Strahilevitz (and I) have discussed. People shouldn't obsess about litigation risks when they have genuine questions. Curiosity isn't discrimination. Will tell is the best policy. Advertisement Each of us may find some relief in the honest, random, and fleeting interactions that show care and respect. These interactions are, I admit, a way to adapt to a flawed status quo. These experiences are ours. Self-respect can be combined with gratitude. And that is why I am grateful. To the judge, who said about my movement, "You don't really notice it after awhile." To the co-clerk, who found a way to carry my tray without causing me any pain. The caf server who treated my like any other regular loitering patron. To the airport worker, who after I shot at the garbage container from 6 feet, said wryly to me, You're never going to make the NBA. To subway traveler, who stated that my movements were graceful, inspiring. (She was very high. Advertisement They have helped me to live a more fulfilling life. Sometimes they were able to see beyond what I am and sometimes they are able to target that part of me. They were gifts to me. This writing could be considered a long overdue note of gratitude to them all. I was forced to be more open than out of bravery. I did not choose exposure, and I don't know how much I regret my childhood avoidances. It can be difficult to avoid exclusion. The lockdown experience of having control over your online frames is appealing. Tinkering with the optics is only a superficial adaptation. A greater understanding of disability seems to be the best and most effective way to live in a body that isn't fully under my control. While I cannot stop others from code people like me disabled first and everything else second, it is something that I can do. Even though it is not my responsibility to comfort others in need, sometimes a small effort on my part can make the social situation better for others. Advertisement This observation can be applied in both directions. People with disabilities adapt to their environments. Given our fluid world, it is reasonable to make a small effort to show respect and perhaps even more lasting interactions. The world is opening up to reconnect, reformatting, and perhaps even for the most capable. Adam Gopnik wrote that it is long overdue and glorious. It's like a flower blossoming in time-lapse photographs. The CDC director said that most people could now return to their normal lives before the pandemic. Advertisement Advertisement But pre-pandemic life was too close for many. Some people feel that there is no normal, happy life they can return to. The goal is to open, not close. So the urgent question is: How many people will be excluded from renewed social circles? Millions were for countless decades before COVID-19 was invented. This might pose some questions. You might be asked questions such as whether you are willing to let others in, if they ask. How you will value the unusual and the bizarre as you rebuild your normal life. How isolating a life locked down can be for you. Whether you'll be open. If you are able to be. It doesn't matter if you can. Future Tense is a collaboration between Slate, New America and Arizona State University. It examines emerging technologies and public policy.


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