{"id":482355,"date":"2022-01-09T04:33:24","date_gmt":"2022-01-09T12:33:24","guid":{"rendered":"https:\/\/disabilityvisibilityproject.com\/?p=482355"},"modified":"2026-02-12T17:19:11","modified_gmt":"2026-02-13T01:19:11","slug":"reading-storms-embracing-life-a-remembrance-of-neil-marcus","status":"publish","type":"post","link":"https:\/\/disabilityvisibilityproject.com\/2022\/01\/09\/reading-storms-embracing-life-a-remembrance-of-neil-marcus\/","title":{"rendered":"Reading Storms, Embracing Life: A Remembrance of Neil Marcus"},"content":{"rendered":"<h3><b>Reading Storms, Embracing Life: A Remembrance of Neil Marcus<\/b><\/h3>\n<p>&nbsp;<\/p>\n<h4><b>Steven E. Brown<\/b><\/h4>\n<p>&nbsp;<\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">\u201cI&#8217;m a human bridge in a moment of time, spanning as far and as relevant as my<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">thoughts will carry me.\u201d<\/span><\/p>\n<p style=\"text-align: center;\"><span style=\"font-weight: 400;\">Neil Marcus to Esther Ehrlich, 2004<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"font-weight: 400;\">One late night last November, my wife, Lillian Gonzales Brown, and I, were stunned to learn of <\/span><a href=\"https:\/\/www.nytimes.com\/2021\/12\/28\/arts\/neil-marcus-dead.html\"><span style=\"font-weight: 400;\">Neil Marcus\u2019s deat<\/span><\/a><span style=\"font-weight: 400;\">h. Neil (<\/span><span style=\"font-weight: 400;\">Jan. 3, 1954-Nov. 17, 2021) <\/span><span style=\"font-weight: 400;\">was a friend, co-conspirator, and joy to be around. I met Neil in early 1991, a few months after I left my job directing an independent living center in Norman, Oklahoma, and moved to Berkeley in late 1990 to work at the World Institute on Disability. One of my new colleagues gifted me a ticket to see a play they thought I\u2019d enjoy, called &#8220;Storm Reading.&#8221; The play starred Neil and two other actors, all signing or verbalizing Neil&#8217;s words based on years of his diary. I loved it!<\/span><\/p>\n<p><span style=\"font-weight: 400;\">At that time, I\u2019d been talking about Disability Culture for several years, mostly in Oklahoma. For the first time, watching \u201cStorm Reading,\u201d I experienced Disability Culture being performed right in front of me. I was thrilled. What I loved most was the humor and there was a lot of it.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">My still-favorite skit is Neil rolling up to a Burger King drive-through window and placing an order. With his speech impairment, Neil and the person waiting on him have trouble communicating\u2014but after a series of comic interactions, the Burger King \u201cemployee\u201d finally gets it right. Cracks me up every time.\u00a0 Lots of other skits, vignettes, and observations make up \u201cStorm Reading,\u201d a version of which is available on YouTube.<\/span><\/p>\n<div class=\"jetpack-video-wrapper\"><span class=\"embed-youtube\" style=\"text-align:center; display: block;\"><iframe loading=\"lazy\" class=\"youtube-player\" width=\"1360\" height=\"765\" src=\"https:\/\/www.youtube.com\/embed\/XVT9eqeiDdc?version=3&#038;rel=1&#038;showsearch=0&#038;showinfo=1&#038;iv_load_policy=1&#038;fs=1&#038;hl=en-US&#038;autohide=2&#038;wmode=transparent\" allowfullscreen=\"true\" style=\"border:0;\" sandbox=\"allow-scripts allow-same-origin allow-popups allow-presentation allow-popups-to-escape-sandbox\"><\/iframe><\/span><\/div>\n<p>&nbsp;<\/p>\n<p><span style=\"font-weight: 400;\">Not long after that, I sat in a line to see a local singer, Betsy Rose. I noticed Neil in line near me. I introduced myself, let him know I\u2019d recently seen his play, and it didn\u2019t take long for us to realize we had a lot in common. We also discovered we lived within a few blocks of each other. Soon after our first meeting, I visited his apartment, a Disability Culture treasure trove, full of his writing, pictures, and disability memorabilia of all kinds. We remained friends, though he remained in Berkeley and I moved, first to New Mexico, then Hawaii, California, and Arizona. In fact, Neil and his partner at the time, <\/span><a href=\"https:\/\/lsa.umich.edu\/english\/people\/faculty\/petra.html\"><span style=\"font-weight: 400;\">Petra Kuppers<\/span><\/a><span style=\"font-weight: 400;\">, also <\/span><span style=\"font-weight: 400;\">an artist and scholar of disability culture and art,<\/span><span style=\"font-weight: 400;\"> visited with Lillian and I, in Hawaii, when, among other activities, they talked to one of my classes and led a community performance.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Neil and I didn\u2019t communicate often in the past few years, but we maintained an email correspondence and shared our various ventures. I wanted to know what he was up to as I began work on a still-in-progress book about Disability Culture.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Since his death, many friends, colleagues, admirers, co-conspirators have shared <\/span><span style=\"font-weight: 400;\">stories and some pictures about Neil and his love and joy and dancing and swimming and simply living.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In 2004, Neil was interviewed for the University of California at Berkeley Artists with Disabilities oral history project. Neil and his interviewer, Esther Ehrlich, broke new ground in how they conducted these interviews. Paying attention to how physically difficult it was for Neil both to speak and to write and observing his limited energy, they came up with a plan for how to conduct these oral interviews. In the lengthy introduction to their conversation, Ehrlich described Neil as, \u201can unusually creative man, with a wildly active, associative mind and expressive body. In planning for our oral history interview, a central question emerged: How do we capture this artist in all of his boldness and complexity?\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">They met several times in summer 2004 to plan how to do these interviews. They decided that when they met in person they would communicate via instant messaging on two computers placed side-by-side at the Regional Oral History Office. Neil decided he\u2019d be able to say more via writing than speaking. But, they also:\u00a0<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"font-weight: 400;\">decided that it was important that Neil have the freedom to switch to <\/span><span style=\"font-weight: 400;\">speech whenever he felt that he would be able to express himself more fully\u00a0<\/span><span style=\"font-weight: 400;\">in that way. Videotaping the interview sessions would allow us to preserve any\u00a0<\/span><span style=\"font-weight: 400;\">verbal exchanges between us. It would also provide a record of our nonverbal\u00a0<\/span><span style=\"font-weight: 400;\">communication and give Neil the opportunity to slip in a spontaneous bit of\u00a0<\/span><span style=\"font-weight: 400;\">performance art, if he felt so moved.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">From these interviews, and other sources, I learned Neil was born in Scarsdale, near New York City in 1954, to Wil and Lydia Marcus, the youngest of five children, with two older brothers and two older sisters. His memories of New York included walking on the beach, which he continued to do after his family moved when he was six, to Ojai, in southern California. At that time he even thought of himself as a marine biologist\u2014enjoying things like finding petrified whalebone on the beach.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">His parents and grandmothers were artists and musicians. His mother was an actor\/radio personality and actress. Neil recalled his father, who produced industrial films, had an unconventional, rebellious sense of humor. At an early age, while still in New York, Neil fell in love with musicals and memorized them.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">When he was eight, Neil went to summer camp. When he returned a month later, both his fists were involuntarily clenched, a hip was misaligned and his tongue wouldn\u2019t cooperate. He was diagnosed with a form of dystonia, a neurological disorder that in Neil\u2019s case, led to spasticity, involuntary movements and difficulty speaking. <\/span><\/p>\n<p><span style=\"font-weight: 400;\">At the time of Neil\u2019s first symptoms, several medical interventions were performed to destroy some of the nerves in his brain that were sending mixed-up signals to his limbs. After a third surgery he seemed to be cured, but soon thereafter spasms returned. Much later, in \u201cStorm Reading,\u201d Neil said, <\/span><span style=\"font-weight: 400;\">\u201cSome people, when they see my twisted frame, dystonic disarray, embrace the storm. Their eyes light up and they rush to hug me as a long-lost brother, as if embracing a storm was food for their soul. I can teach you to read a storm.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In the Berkeley oral interviews discussing his younger years, Neil recalled his parents\u2019 Ojai home as a hotbed of creativity. Artists of all kinds visited, including at a weekly Friday night poker game where many of the players had been on the 1950s Hollywood blacklist. He remembered that even\u00a0 though he was only 8 or 9, they\u2019d let him play with them.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">A friend of his mother\u2019s, Beatrice Wood, was the last living Dadaist, an avant-garde art movement. She was known as the mother of Dada. Wood, who died in 1998 at the age of 105, was also the inspiration for the Rose character in the movie <\/span><i><span style=\"font-weight: 400;\">Titanic<\/span><\/i><span style=\"font-weight: 400;\">, though she was not on that ship. Neil recalled she wore Indian saris and talked about her love life. He also said he remembered hundreds of people like that and one of the things he learned in the Ojai environment was that everyone has an incredible story.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">As a teenager, several events that influenced him for the remainder of his life occurred at the age of 14. One was that while writing high school assignments, he realized he liked it and it was in high school that he <\/span><span style=\"font-weight: 400;\">began to think of himself as a writer, artist, and performer.\u00a0\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Neil\u2019s public speaking began in <\/span><span style=\"font-weight: 400;\">his senior year in high school. He learned the power of speaking from his heart and when he did that it had an impact on his fellow students. He also learned he could combine art and social change based on his own experiences. This belief stemmed as well, from another experience begun at the age of 14, when Neil\u2019s <\/span><span style=\"font-weight: 400;\">father took him, not long after what Neil described as \u201ca half-hearted suicide attempt\u201d to co-counseling.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Aspects of co-counseling remained with Neil for the rest of his life. This included a belief that we are never to act a victim or believe we are powerless. Neil also learned to see the goodness in everyone and view love as a basis for moving through the world.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">As a young adult, Neil moved to Berkeley in the late 1970s. He was attending a junior college near LA and his roommate brought him to Berkeley. On that trip, he learned about the Center for Independent Living and later moved to Berkeley to attend the CIL Computer Training Program.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">In Berkeley, in the late 1970s and 1980s, Neil wrote lots of observations in his diary and began to write and distribute his <\/span><i><span style=\"font-weight: 400;\">Special Effects<\/span><\/i><span style=\"font-weight: 400;\"> newsletter. He described this newsletter as \u201cwriting about what i saw and felt and what the vision of disability might be&#8230;like a new kind of jazz &#8230;&#8230;&#8230;\u201d\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">I recall being introduced to <\/span><i><span style=\"font-weight: 400;\">Special Effects<\/span><\/i><span style=\"font-weight: 400;\"> on my first visit to his apartment.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">The 1980s was also when \u201cStorm Reading,\u201d which came directly from his diary, was produced. He <\/span><span style=\"font-weight: 400;\">toured from 1988 to 1998 in over 300 places throughout the world. He recalled, \u201cIt changed my life and taught me that I can influence the world.\u201d\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">One of the ideas and most well-known of Neil\u2019s writings is that \u201cdisability is not a brave struggle or courage in the face of adversity, disability is an art.\u201d This is in \u201cStorm Reading,\u201d and has been reproduced multiple times in many other publications.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Another of Neil\u2019s pieces that has become famous is his poem, \u201cDisabled Country.\u201d I asked him once if he remembered when he wrote it. He said he didn\u2019t but that it was sometime in the mid-1980s. When the Smithsonian Institution created the online website exhibit, \u201c<\/span><a href=\"https:\/\/everybody.si.edu\/\"><span style=\"font-weight: 400;\">EveryBody: An Artifact History of Disability in America<\/span><\/a><span style=\"font-weight: 400;\">,\u201d in the early 2000s, they contacted him<\/span> <span style=\"font-weight: 400;\">about using this poem. It follows (there is also a video of the poem on YouTube):<\/span><\/p>\n<p style=\"padding-left: 40px;\"><b>Disabled Country (n.d.)<\/b><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"font-weight: 400;\">by Neil Marcus<\/span><\/p>\n<p style=\"padding-left: 40px;\"><i><span style=\"font-weight: 400;\">If there was a country called disabled, I would be from there.<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">I live disabled culture, eat disabled food, make disabled love,\u00a0<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">cry disabled tears, climb disabled mountains and tell disabled stories.<\/span><\/i><\/p>\n<p style=\"padding-left: 40px;\"><i><span style=\"font-weight: 400;\">If there was a country called disabled,<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">Then I am one of its citizens. I came there at age 8. I tried to leave.<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">Was encouraged by doctors to leave. I tried to surgically remove myself from disabled country but found myself, in the end,<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">staying and living there.<\/span><\/i><\/p>\n<p style=\"padding-left: 40px;\"><i><span style=\"font-weight: 400;\">If there was a country called disabled,<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">I would always have to remind myself that I am from there. I often want to forget. I would have to remember&#8230;to remember.<\/span><\/i><\/p>\n<p style=\"padding-left: 40px;\"><i><span style=\"font-weight: 400;\">In my life&#8217;s journey I am making myself<\/span><\/i><i><span style=\"font-weight: 400;\"><br \/>\n<\/span><\/i><i><span style=\"font-weight: 400;\">At home in my country.<\/span><\/i><\/p>\n<div class=\"jetpack-video-wrapper\"><span class=\"embed-youtube\" style=\"text-align:center; display: block;\"><iframe loading=\"lazy\" class=\"youtube-player\" width=\"1360\" height=\"765\" src=\"https:\/\/www.youtube.com\/embed\/e8CLrv8dd-E?version=3&#038;rel=1&#038;showsearch=0&#038;showinfo=1&#038;iv_load_policy=1&#038;fs=1&#038;hl=en-US&#038;autohide=2&#038;wmode=transparent\" allowfullscreen=\"true\" style=\"border:0;\" sandbox=\"allow-scripts allow-same-origin allow-popups allow-presentation allow-popups-to-escape-sandbox\"><\/iframe><\/span><\/div>\n<p><span style=\"font-weight: 400;\">Neil and Petra Kuppers, who I mentioned visited us with Neil in Hawaii, were together as a couple for several years. They wrote about their relationship in a book called, <\/span><a href=\"https:\/\/wordgathering.syr.edu\/past_issues\/issue7\/book_review\/kuppers.html\"><i><span style=\"font-weight: 400;\">Cripple Poetics: A Love Story<\/span><\/i><\/a><span style=\"font-weight: 400;\">.\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Petra also described Neil\u2019s pivotal 2013 role in the beginning of a group of artists in the Bay Area swimming together as an art project. Neil needed to exercise more but didn\u2019t want to do it in the usual way. Petra wrote:<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"font-weight: 400;\">What did work for him, though, was performing for a camera, to an audience. <\/span><span style=\"font-weight: 400;\">Neil bought a small underwater camera and invited his collaborators to come with him and take photos of him underwater\u2026we worked out that this project had a lot of juice and created a meaningful experience for many people. So we created a conceptual frame that included but went beyond self-care and called the project Salamander, as many of us had strong mythical associations with artful water play and with the myth valency of creatures like salamanders.<\/span><\/p>\n<figure id=\"attachment_482346\" aria-describedby=\"caption-attachment-482346\" style=\"width: 500px\" class=\"wp-caption aligncenter\"><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" data-attachment-id=\"482346\" data-permalink=\"https:\/\/disabilityvisibilityproject.com\/2022\/01\/09\/reading-storms-embracing-life-a-remembrance-of-neil-marcus\/nel-and-petra-in-honolulu\/\" data-orig-file=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?fit=1710%2C1206&amp;ssl=1\" data-orig-size=\"1710,1206\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"Nel and Petra in Honolulu\" data-image-description=\"\" data-image-caption=\"&lt;p&gt;Petra and Neil are sitting side-by-side in their wheelchairs in or just outside a building in Honolulu. Petra, a smiling woman with short hair and glasses, is wearing a bright yellow top and wearing a lei as she gazes at Neil, to her left. Neil, a man with short hair and a beard, both dark with some gray mixed in, is wearing a white shirt and a lei, and gazing mischievously toward Petra. Courtesy of Petra Kuppers.&lt;\/p&gt;\n\" data-large-file=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?fit=1024%2C722&amp;ssl=1\" class=\"wp-image-482346\" src=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?resize=500%2C353&#038;ssl=1\" alt=\"Petra and Neil are sitting side-by-side in their wheelchairs in or just outside a building in Honolulu. Petra, a smiling woman with short hair and glasses, is wearing a bright yellow top and wearing a lei as she gazes at Neil, to her left. Neil, a man with short hair and a beard, both dark with some gray mixed in, is wearing a white shirt and a lei, and gazing mischievously toward Petra. Courtesy of Petra Kuppers.\" width=\"500\" height=\"353\" srcset=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?resize=300%2C212&amp;ssl=1 300w, https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?resize=1024%2C722&amp;ssl=1 1024w, https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?resize=768%2C542&amp;ssl=1 768w, https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?resize=1536%2C1083&amp;ssl=1 1536w, https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Nel-and-Petra-in-Honolulu.png?w=1710&amp;ssl=1 1710w\" sizes=\"auto, (max-width: 500px) 100vw, 500px\" \/><figcaption id=\"caption-attachment-482346\" class=\"wp-caption-text\">Petra and Neil are sitting side-by-side in their wheelchairs in or just outside a building in Honolulu. Petra, a smiling woman with short hair and glasses, is wearing a bright yellow top and wearing a lei as she gazes at Neil, to her left. Neil, a man with short hair and a beard, both dark with some gray mixed in, is wearing a white shirt and a lei, and gazing mischievously toward Petra. Courtesy of Petra Kuppers.<\/figcaption><\/figure>\n<p><span style=\"font-weight: 400;\">When I asked Neil in recent years about his current work, he emailed me a link to a <\/span><span style=\"font-weight: 400;\">2015 essay by graduate student Chelsea Miller. She wrote:<\/span><\/p>\n<p style=\"padding-left: 40px;\"><span style=\"font-weight: 400;\">What is disability? Performance artist, writer, and actor Neil Marcus\u00a0 <\/span><span style=\"font-weight: 400;\">encourages his audience to rethink disability as something that is not medical or physiological. Marcus aims to live artfully: non-medically, non-stereotypically, and full of soul. <\/span><span style=\"font-weight: 400;\">\u201cIt requires a lot of creativity to do life.\u201d<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Or, to put it another way, as Neil did in the 2004 interviews, <\/span><span style=\"font-weight: 400;\">\u201cmaybe being who you are is the greatest dramae (sic) ever to take place.\u201d\u00a0<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Thanks Neil, for including me in the drama. I am one of many who both miss you while celebrating how you gifted us all with your life.<\/span><\/p>\n<p>&nbsp;<\/p>\n<h4><b>References<\/b><\/h4>\n<p><span style=\"font-weight: 400;\">Betsy Rose. <\/span><a href=\"https:\/\/www.betsyrosemusic.org\/\"><span style=\"font-weight: 400;\">https:\/\/www.betsyrosemusic.org\/<\/span><\/a><\/p>\n<p><span style=\"font-weight: 400;\">Kuppers, Petra and Neil Marcus. (with Lisa Steichmann, photographer). (2008). <\/span><i><span style=\"font-weight: 400;\">Cripple Poetics: A Love Story<\/span><\/i><span style=\"font-weight: 400;\">. Homofactus Press, <\/span><a href=\"https:\/\/www.homofactus.com\/\"><span style=\"font-weight: 400;\">https:\/\/www.homofactus.com\/<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Kuppers, Petra. (2018). \u201cWriting with the Salamander: An Ecopoetic Community Performance Project,\u201d in <\/span><span style=\"font-weight: 400;\">Angela Hume and Gillian Osborne (Eds.).<\/span><i><span style=\"font-weight: 400;\"> Ecopoetics: Essays in the Field<\/span><\/i><b>,\u00a0 <\/b><span style=\"font-weight: 400;\">pp.118-142<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Marcus, Neil. \u201cDisabled Country,\u201d <\/span><a href=\"https:\/\/everybody.si.edu\/\"><span style=\"font-weight: 400;\">EveryBody: An Artifact History of Disability in America<\/span><\/a><span style=\"font-weight: 400;\">. Smithsonian Natural Museum of American History. Retrieved from <\/span><a href=\"https:\/\/everybody.si.edu\/place\"><span style=\"font-weight: 400;\">https:\/\/everybody.si.edu\/place<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Marcus, Neil (nd). \u201cDisabled Country\u201d video. Retrieved from <\/span><a href=\"https:\/\/www.youtube.com\/watch?v=e8CLrv8dd-E&amp;feature=youtu.be\"><span style=\"font-weight: 400;\">https:\/\/www.youtube.com\/watch?v=e8CLrv8dd-E&amp;feature=youtu.be<\/span><\/a><\/p>\n<p><span style=\"font-weight: 400;\">Marcus, Neil, ed., &#8220;A Limited Edition Collection of SPECIAL EFFECTS Newsletter,&#8221; (Santa Barbara, CA: Access Theatre, 1988).<\/span><span style=\"font-weight: 400;\"><br \/>\n<\/span><span style=\"font-weight: 400;\">Marcus, Neil. &#8220;Neil Marcus: Performance Artist.&#8221; Interview by Esther Ehrlich in 2004. Oral History Center, The Bancroft Library, University of California, Berkeley, 2006.<\/span><span style=\"font-weight: 400;\"><br \/>\n<\/span><span style=\"font-weight: 400;\">Interview date(s) 2004. {Note: in interview Neil asked for Esther\u2019s full name and title so it would be written into record: p. 57: &lt; Esther Ehrlich, interviewer\/project manager of the Artists with Disabilities oral history project, Regional Oral History Office, UC, Berkeley.&gt;<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Marcus, Neil.\u00a0 <\/span><i><span style=\"font-weight: 400;\">Storm Reading<\/span><\/i><span style=\"font-weight: 400;\">. (1996). <\/span><a href=\"https:\/\/www.youtube.com\/watch?v=XVT9eqeiDdc\"><span style=\"font-weight: 400;\">https:\/\/www.youtube.com\/watch?v=XVT9eqeiDdc<\/span><\/a><\/p>\n<p><span style=\"font-weight: 400;\">Marcus, Neil. <\/span><i><span style=\"font-weight: 400;\">Storm Reading<\/span><\/i><span style=\"font-weight: 400;\">. (1988). Access Theatre. See \u201cCelebrating Storm Reading\u201d Nov. 7 2018. Retrieved from <\/span><a href=\"https:\/\/www.youtube.com\/watch?v=EIf0NM3n1Us\"><span style=\"font-weight: 400;\">https:\/\/www.youtube.com\/watch?v=EIf0NM3n1Us<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Miller, Chelsea. (August 18, 2015). &#8220;body\/freedom\/art&#8221;: Rethinking disability through art.\u00a0 graduate student in Public History, University of Massachusetts Amherst. Retrieved from:<\/span><\/p>\n<p><a href=\"https:\/\/americanhistory.si.edu\/blog\/bodyfreedomart-rethinking-disability-through-art\"><span style=\"font-weight: 400;\">https:\/\/americanhistory.si.edu\/blog\/bodyfreedomart-rethinking-disability-through-art<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">Sullivan, Meg. (March 30, 1989). \u201cStorm Reading\u201d: Disabled Man Uses Own Experiences in Play Seeking to Dispel Prejudices. Retrieved from: <a href=\"https:\/\/www.latimes.com\/archives\/la-xpm-1989-03-30-ve-736-story.html\">https:\/\/www.latimes.com\/archives\/la-xpm-1989-03-30-ve-736-story.html<\/a><\/span><\/p>\n<p>&nbsp;<\/p>\n<h4><b>ABOUT<\/b><\/h4>\n<figure id=\"attachment_482345\" aria-describedby=\"caption-attachment-482345\" style=\"width: 425px\" class=\"wp-caption aligncenter\"><img data-recalc-dims=\"1\" loading=\"lazy\" decoding=\"async\" data-attachment-id=\"482345\" data-permalink=\"https:\/\/disabilityvisibilityproject.com\/2022\/01\/09\/reading-storms-embracing-life-a-remembrance-of-neil-marcus\/steve-access-is-love\/\" data-orig-file=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Steve-Access-is-Love.jpg?fit=960%2C1280&amp;ssl=1\" data-orig-size=\"960,1280\" data-comments-opened=\"1\" data-image-meta=\"{&quot;aperture&quot;:&quot;0&quot;,&quot;credit&quot;:&quot;&quot;,&quot;camera&quot;:&quot;&quot;,&quot;caption&quot;:&quot;&quot;,&quot;created_timestamp&quot;:&quot;0&quot;,&quot;copyright&quot;:&quot;&quot;,&quot;focal_length&quot;:&quot;0&quot;,&quot;iso&quot;:&quot;0&quot;,&quot;shutter_speed&quot;:&quot;0&quot;,&quot;title&quot;:&quot;&quot;,&quot;orientation&quot;:&quot;0&quot;}\" data-image-title=\"Steve Access is Love\" data-image-description=\"\" data-image-caption=\"&lt;p&gt;Steve Brown, an older, smiling, man with graying brown beard is shown in his office in Arizona, wearing a sleeveless, \u201cAccess is Love\u201d purple tank top.&lt;\/p&gt;\n\" data-large-file=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Steve-Access-is-Love.jpg?fit=768%2C1024&amp;ssl=1\" class=\"wp-image-482345\" src=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Steve-Access-is-Love.jpg?resize=425%2C567&#038;ssl=1\" alt=\"Steve Brown, an older, smiling, man with graying brown beard is shown in his office in Arizona, wearing a sleeveless, \u201cAccess is Love\u201d purple tank top.\" width=\"425\" height=\"567\" srcset=\"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Steve-Access-is-Love.jpg?resize=225%2C300&amp;ssl=1 225w, https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Steve-Access-is-Love.jpg?resize=768%2C1024&amp;ssl=1 768w, https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Steve-Access-is-Love.jpg?w=960&amp;ssl=1 960w\" sizes=\"auto, (max-width: 425px) 100vw, 425px\" \/><figcaption id=\"caption-attachment-482345\" class=\"wp-caption-text\">Steve Brown, an older, smiling, man with graying brown beard is shown in his office in Arizona, wearing a sleeveless, \u201cAccess is Love\u201d purple tank top.<\/figcaption><\/figure>\n<p><span style=\"font-weight: 400;\">Historian <strong>Steven E. Brown<\/strong>\u00a0(PhD, University of Oklahoma, 1981) is Co-Founder, with his wife, Lillian Gonzales Brown, of the <\/span><a href=\"http:\/\/www.instituteondisabilityculture.org\/\"><span style=\"font-weight: 400;\">Institute on Disability Culture <\/span><\/a><span style=\"font-weight: 400;\">and retired Professor of Disability Studies, Center on Disability Studies (CDS), University of Hawaii. He is an individual with a disability and family member of individuals with disabilities. In 2002, he moved to Hawaii and began working at CDS. He retired as a Full Professor and returned to the mainland in 2014, though he continued teaching online through 2019. His books are <\/span><i><span style=\"font-weight: 400;\">Movie Stars and Sensuous Scars: Essays on the Journey from Disability Shame to Disability Pride <\/span><\/i><span style=\"font-weight: 400;\">(2003); <\/span><i><span style=\"font-weight: 400;\">Surprised to be Standing: A Spiritual Journey<\/span><\/i><span style=\"font-weight: 400;\"> (2011); and <\/span><i><span style=\"font-weight: 400;\">Ed Roberts: Wheelchair Genius<\/span><\/i><span style=\"font-weight: 400;\"> (2015) for middle grade readers which can all be found at: <\/span><a href=\"https:\/\/smile.amazon.com\/Steven-E-Brown\/e\/B004H9QX7Y\/ref=dp_byline_cont_pop_book_1\"><span style=\"font-weight: 400;\">https:\/\/smile.amazon.com\/Steven-E-Brown\/e\/B004H9QX7Y\/ref=dp_byline_cont_pop_book_1<\/span><\/a><\/p>\n<p><span style=\"font-weight: 400;\">He\u2019s also published many articles and presented on disability rights and culture throughout the U.S. as well as in Canada; Germany; Hungary; Korea (via remote video) Japan; Norway; Saipan; Sweden; Taiwan; and Thailand. He\u2019s currently working on a book about Disability Culture.<\/span><\/p>\n<p>&nbsp;<\/p>\n<p style=\"text-align: center;\"><b>Support Disability Media and Culture<\/b><\/p>\n<p style=\"text-align: center;\"><a href=\"https:\/\/disabilityvisibilityproject.com\/donate\/\"><b>DONATE<\/b><\/a><b>\u00a0to the Disability Visibility Project\u00ae<\/b><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Reading Storms, Embracing Life: A Remembrance of Neil Marcus &nbsp; Steven E. Brown &nbsp; \u201cI&#8217;m a human bridge in a moment of time, spanning as far and as relevant as &hellip; <a href=\"https:\/\/disabilityvisibilityproject.com\/2022\/01\/09\/reading-storms-embracing-life-a-remembrance-of-neil-marcus\/\" class=\"read-more\">Continue Reading <span class=\"screen-reader-text\">Reading Storms, Embracing Life: A Remembrance of Neil Marcus<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":482362,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"advanced_seo_description":"","jetpack_seo_html_title":"","jetpack_seo_noindex":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"_wpas_customize_per_network":false,"jetpack_post_was_ever_published":false},"categories":[6701202,1],"tags":[587152664,2005041,587153095,41678,422,5386],"class_list":["post-482355","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-guest-blog-posts","category-uncategorized","tag-disability-arts","tag-disability-culture","tag-neil-marcus","tag-performance-art","tag-poetry","tag-theatre","post-has-thumbnail"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/i0.wp.com\/disabilityvisibilityproject.com\/wp-content\/uploads\/2022\/01\/Petra-and-Neil.png?fit=1600%2C900&ssl=1","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p4H7t1-21tV","jetpack_likes_enabled":true,"amp_enabled":true,"_links":{"self":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/posts\/482355","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/comments?post=482355"}],"version-history":[{"count":0,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/posts\/482355\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/media\/482362"}],"wp:attachment":[{"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/media?parent=482355"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/categories?post=482355"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/disabilityvisibilityproject.com\/wp-json\/wp\/v2\/tags?post=482355"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}