Disability Models and Vision

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A pair of rectangular frame glasses with black and orange frames on top of a vision test chart.

There are two basic models of understanding disability: medical and social. The medical model conceives of disability as originating within the body, and often as in need of medical interventions.  By contrast, the social model draws distinction between impairments (physical maladies) and disabling barriers to full inclusion. Obviously many disabilities and illnesses fit the medical model well; cancer treatment usually requires medication or surgery more urgently than disability accommodations. Yet cancer prevention measures such as reducing industrial pollutants can’t be addressed in a hospital or doctors’ office.

Today I want to “look” at vision impairment and the two models of disability. Under the medical model, such a disability is recognized as originating in the body, being physical in nature, and eligible for medical interventions such as eye surgery and corrective lenses. The social model goes much further. It pushes for social acceptance of glasses, for childhood vision tests to ensure early diagnosis, and for larger font size options on government forms. Both models have something valuable to contribute.

Continue reading Disability Models and Vision

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Curiosity and Bigotry

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My son is amazing. Brilliant, funny, kind, and autistic, he is always striking up conversations with strangers. He wants to pet their dogs, compliment their colored hair, or if they are elderly greet them with a cheerful, “Hi Gramps!” He likes to teach people about dinosaurs and his favorite color (orange). He has a lot to say, but it isn’t always easy to understand his message. Even with nine years of speech therapy, his words aren’t always clear.

People want to know why he sounds younger than age, and why they can’t figure out what he’s saying. I tend to answer briefly, “Autism”. I start to become uncomfortable, worried about what comes next. I try to quickly change the subject, before my son overhears us and asks “Are you talking about me?”

You see, he knows he is autistic. He is proud of that. He also knows he has speech delays, and those he is not proud of. He doesn’t yet know just how much of the world considers his diagnosis a tragedy or himself a burden. He doesn’t know that some people would hate him or discriminate against him based on it. He will learn, but please not today.

Spare your questions about vaccines and your opinions on cures for a time when my child won’t have to listen. Save your thoughts about what “those kids” need. He can hear you. He understands you, even if you can’t understand him. You’re curious and that’s okay. But when I’m out with my son, Mother is my job, not Public Health Educator. You can wait to search online for the answers you seek.

Being disabled in public can make someone really self-conscious. They already know the ways their body defies expectation and the ways they stand out. Be cognizant of the fact that disabled people, child and adult, have places to go and things to see, and answering your personal questions about their private health probably isn’t on the day’s agenda. No one owes you their diagnostic label or medical history just to slake your curiosity. It’s okay to be curious. It’s okay to do independent study. But please, don’t share your bigoted misconceptions about autism with me while my son is present. Keep them to yourself.

Heaven’s Gate (4/4)

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Each member wore this model of Nikes. As they committed suicide in stages, still living members cleaned up the dead, and placed purple shrouds over their faces.

Applewhite first mentioned suicide as a solution in 1996, after an internet posting of the group’s beliefs failed to attract positive attention and after a rumor began to circulate that a UFO trailed the Hale-Bopp comet. Applewhite believed Nettles was in that UFO and coming to collect them. He spoke and wrote of it often for the next year. Several members voluntarily left the San Diego mansion where they resided, with one leaving just a month before the fateful action.

In March of 1997, members of Heaven’s Gate donned matching uniforms with patches reading “Heaven’s Gate Away Team”, a reference to Star Trek, their favorite program. Applewhite believed aliens communicated with him through the show, and the members hoped for a peaceful and plentiful future like they saw modelled by that fictional Federation. Before taking a mixture of alcohol and barbiturates, the group went to IHOP for dinner, and put on matching Nike sneakers.

Almost all of the 38 followers who died along with Applewhite over the course of the 3 day suicide had been followers of his for twenty years. Their ability to function without him was severely curtailed, as followers or otherwise. They had turned to Applewhite for every decision, big and small, for years. They believed in his message. In the words of Zeller,

“In the end members chose to commit suicides because they had rejected the intrinsic value of the world and the human body, and because their leader, Applewhite, had indicated that the time was right to discard their attachments to both of them. The vast majority of members accepted this logic and chose to exit their human bodies.

In other words, there was a very clear reason that members chose suicide: because they did not perceive the actions they chose as suicides. They looked to them merely as a form of graduation from an unwanted terrestrial existence on an undesirable planet in disagreeable bodies, to a cosmic existence in the Next Level in perfected new bodies. For members, suicide was the only logical choice within their worldview.”

Heaven’s Gate (3/4)

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The people who joined were generally young and already believed in UFOs before encountering the group. One was a former Scientologist. Applewhite wasn’t convincing skeptics; he was giving believers a system for those beliefs. Accepting this version of aliens wasn’t a big stretch for them. By focusing their efforts, Applewhite and Nettles were able to convert a higher percentage of the people they approached.

Group membership waned following the death of Ti/Nettles, falling from around 80 members to a low of 26. Applewhite fell into a period of depression, and the group struggled to reconcile their beliefs with her evident mortality. Applewhite took out a full-page newspaper ad warning that the end was nigh, and several lapsed members returned. After the he engaged in a “symbolic wedding” where he became married to the group, restoring a sense of unity.

For the twelve years between Nettle’s death and the group’s suicide, Applewhite claimed he was channeling Ti, that her spiritual guidance was still there. He moved the group, from Texas to Mexico and eventually to California, fearful of government retribution that never came. Unlike at Jonestown or Waco, no outside government forces threatened them. Indeed, the group was mostly unheard of or else mocked as strange. Applewhite was facing no charges. There were no government raids.

However, he was expecting them. The 1993 Division of Alcohol, Tobacco, and Firearms raid on the Waco, Texas Branch Davidion cult, an event that included exchange of gun fire and the deaths of four officers and six cult members. It is quite possible Applewhite both feared and desired such an event for his own group. One author who has written about Heaven’s Gate postulates that this lack of intervention may have contributed to their choice to suicide. In his book “Heaven’s Gate: America’s UFO Religion” Benjamin E. Zeller wrote

“I also think that the lack of government persecution against the movement was far more influential than any other factor in pushing the group members toward deciding to commit suicide, as their past statements indicated that they expected this to happen imminently. TheĀ lackĀ of any government siege against them would not only have represented a failure of expectations but a basic logistical problem in how to get their souls to the Next Level.”

Heaven’s Gate (2/4)

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In 1974, Applewhite was arrested for failing to return a rental car, essentially stealing it. He felt he was wrongfully convicted and had been “divinely authorized” to keep the car. He was sentenced to six months in jail, which he spent fine-tuning his beliefs. When he was released, he and Nettles were energized and determined to spread their message. They began hosting events that successfully recruited about half the people in attendance.

Members came and went over the years. Rather than forbidding members from leaving, customary in many cults, Applewhite and Nettles encouraged people to leave if they were not wholly committed. At times he also rejected would-be members, fearing they were really government infiltrators spying on the group.

Many different leadership styles were tried over the life of the group, with the leaders exerting more and less control over members. Marshall and Bonnie went by various names over the years, first calling themselves Guinea and Pig, lab rats in the great experiment of life. Then they started going by No and Peep, portraying themselves as shepherds watching over a flock. Eventually they settled on Do and Ti, names they claimed were meaningless.

Applewhite portrayed himself as a kindly father; rather than issuing harsh edicts, he would express his desires as preferences and quietly reward members who pleased him. Nettles was perceived as a wise and spiritual person. They taught that they were the only source of truth, and encouraged members to rely on them for simple decisions. They rarely spoke to members directly, preferring speak through assistants or written decrees.

In the early years, Applewhite and Nettles used the metaphor of a butterfly to describe their anticipated “chemical, biological” transformation into ascended beings. After Nettles died of cancer in 1985, and left a corpse behind, Applewhite was forced to rethink his theology to account for this. He began to disparage their bodies as mere containers for their spiritual selves, and stated that when they ascended to the “Next Level”, they would be granted new bodies.

Heaven’s Gate (1/4)

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Content warning: This series discusses the mass suicide of Heaven’s Gate.

The 1997 mass suicide of Heaven’s Gate was probably my first awareness of cults as dangerous. I was either too young or not yet born to have noticed Waco or Jonestown. When 39 people killed themselves in matching track suits and Nike sneakers, it seemed utterly bizarre. When I heard they believed this suicide would let them ride the passing Hale-Bopp comet, I thought they were ridiculous. But I thought my own equally cultic theology was sensible, of course.

Heaven’s Gate was a UFO cult, borrowing or stealing elements of Christianity, Buddhism, and the New Age movement. It’s scattered theology appealed to spiritual UFO believers and New Age reformers alike. It promised people disillusioned with this world a better one, under the guidance of ancient aliens including Jesus Christ. Like most UFO groups, they believed ancient aliens had visited the Earth and helped humans on their evolution.

Heaven’s Gate was founded by Marshall Applewhite and Bonnie Nettles, originally under the name Anonymous Sexaholics Celibacy Church. The two had an incredibly close bond, and lived together as a platonic couple. Bonnie believed that she received messages from a 19th century friar named Brother Francis. This belief led to the dissolution of her marriage to Joseph Nettles, and she lost custody of their four children. Applewhite’s wife had divorced him and moved away with their children, upon learning of an extramarital affair he had with a male university student.

Before becoming a guru, Marshall Applewhite was a university music professor at the University of Alabama and later the University of St. Thomas in Texas. He was fired from University of Alabama for sexual misconduct with a male student at l though it is possible he lost the St. Thomas appointment for similar misconduct. Applewhite would briefly identify as a homosexual while living in Texas. Over his decades as a guru, Applewhite would struggle with sex and sexuality. Ultimately, he came to see sexual urges as a hindrance to spiritual ascension. Along with seven other members of the cult, Marshall was surgically castrated

In each other, Applewhite and Nettles found someone to believe in and agree with their interpretations of Scripture and the world around them. When Nettles found alignment in their star charts, Applewhite determined they must have known each other in a past life. He determined she was to be the “sage” and he was to be the “speaker”. The two started a bookstore and meditation center. When those failed, they took to traveling to New Age and UFO conventions to spread their message. In their first years together, they gained only one convert.