Understanding Disability, Starting At Home

By | June 22, 2016

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“Understanding,” a sculpture by Martin Creed, a British artist, displayed at Brooklyn Bridge Park in New York. ISABELLA PENNEY

Our daughter, Isabella, is slowly losing her sight. I don’t say this with ease or fear but conditionally, as her vision can be fully restored, her doctor has reassured us, as he ups her medications and we wait for better news.

For now, though, Isabella is losing her ability to see. As a university graduate fresh from four intense years of studying and testing and receiving a coveted degree, she is ready to take on the demands of adulthood. And yet, to experience a growing dimness of the world — cloudy faces, blurry objects, details obscured — just as she wants to embrace it couldn’t be worse timing.

My husband, our son and I try to tell Isabella that her problem is, in fact, manageable and she’ll have her full sight back. But even we cannot always know the best way to react or tell her what she needs to hear let alone understand what she is experiencing, as the loss is not visible to us. No matter how much she describes the increments of the infliction, we feel inadequate in trying to allay her anxieties, which rise and fall by the day. From looking at her, you’d never know Isabella cannot see you totally back.

Her vision loss has been steady for two years, being cursed with a condition called uveitis, an inflammation of the tissue in the eye wall, or uvea, which generates scar tissue — cataracts — hence, the creeping blindness. Her doctor says that uveitis is brought on by an autoimmune disease, and that if he knew its origins he’d win a Nobel prize. But until the inflammation ebbs, he cannot remove the cataracts.

The symptoms first appeared in December 2015, as she finished exams that semester at St. Andrews in Scotland, where she was a third-year student studying psychology and German. Then, the pain was so excruciating and sudden that she rushed to the nearest hospital, in Dundee, close to St. Andrews. Using a long needle, a doctor injected a solution in her left eye to unstick the pupil from the lens and sent her home. A few days later, Isabella flew home to New York for the Christmas holidays. She landed at JFK with an eye patch to cover the huge bruise encircling her eye.

We took the eye attack in stride, feeling confident that a New York eye specialist could solve the problem. That doctor, the same one she is seeing nearly two years later, put her on steroids to stop the inflammation from attacking her eyes.

We thought the worst was over. She went back to Europe, but this time to Vienna for the spring semester, to study German intensively. She followed up medically with a uveitis specialist there, who was recommended by the New York doctor. Isabella’s sight worsened, however, punctuated by wracking pain in her eyes. The Viennese doctor upped the steroids to ease the inflammation but never delved into finding a long-term solution, aware that Isabella was in the city only for a few months.

Back in New York for the summer, Isabella’s steroids were maintained, on and off. Her vision steadied — no pain, no further loss of clarity, no glaucoma side attacks. That fall and spring back in Scotland, her status remained even, with no progress. We stopped denying the seriousness of her situation when Isabella had to ask her professors for more time to take exams. She had a disability.

As a journalist who covers the United Nations, I find little positive news to write about amid the ceaseless suffering that the UN takes under its wing. When I go home to Brooklyn by evening, removed from the halls and meeting rooms of the UN, where so much human cruelty is discussed and dissected, I am cognizant that most of the world is absorbing little of the important matters going on at the UN, turning away out of will or for self-preservation.

I have stopped being shocked at the numbers, sometimes recited daily, of the dead from the wars in Syria, Ukraine or Yemen; attacks by ISIS; the toll of natural disasters; extrajudicial killings by governments on their own people; the degrading treatment of women and girls.

The recitation of atrocities becomes numbing, until the suffering escalates, inches up a notch, like when Syria’s president bunker-bombs people in eastern Aleppo, with its buddy, Russia, and the pictures of children, strewn in blood and dust and given up to a higher power, emerge to remind those willing to look and ponder that the war has not let up and that the UN and the big powers — United States, Russia, China, France, Britain and others — have not fulfilled their duty to halt the march of death.

What is rare at the UN is when a patch of blue opens, the sky is revealed, and I hear stories of redemption, of compassion, of work that alleviates human suffering. I come across such revelations when I least expect them, renewing my faith in the ability of people to search for remedies and solutions. I experienced such a moment in an unlikely way last spring: reading a UN report on disability rights, hardly the stuff of lightness and being. Yet in it, I wandered through policy prose that I had not closely encountered before: what it meant to live with a disability.

In the pages of the report, describing collaborations that carry out the Convention on the Rights of Persons With Disabilities, it dawned on me that people with disabilities — visible or otherwise — rarely get all the help they need to conduct their lives on par with those without disabilities. I began to relate, through no small miracle of the wonky language, to the problems described in the report, and to be more aware that people with disabilities tend to get shunted to society’s shadows for no good reason.

The report told about a new program, for instance, in Moldova to introduce “judicial oversight” of psychiatric institutions; the right to a work environment conducive to people with disabilities in Costa Rica; the passing of a new disability law in Indonesia; and in the Pacific, enhancing data collection on disabilities.

I found myself thinking about all the people who must work so much harder for their basic rights and space in the world because of problems they could not have foretold or prevented and never asked to have imposed on them.

And in these moments, I gained respect for the UN in a way that I often cannot muster when listening to the rhetoric spilling into the vaulted chamber of the Security Council, verbiage that usually leads nowhere and satisfies few. The UN accomplishes good things, but this side of the institution was not always apparent enough to me or to millions of other people who have little idea what goes on at the UN or don’t care.

Which leads me back to Isabella, who is home with us in New York now, trying to handle her disability in a city that does not reward anyone who cannot move, see and think fast. She cannot count change quickly enough, for example, at a new café job. Or whip up an espresso perfectly for customers or read a statistics textbook well enough for graduate school exams. She can no longer drive and barely distinguish players from the ball in her nighttime soccer club. She reads her cellphone practically in her face, squinting by second nature.

What she can still do is jog, meet her friends and work in her day job at a psychology lab while forcing herself to stay buoyed in spirit and relying more on her other senses. When she asked me what she should do when people are talking to her and she can’t see their facial features, I suggested she try listening better, to put that sense to more use. She liked that idea, as if she could tap an advantage that others lacked.

We’ve become more sympathetic to Isabella’s plight as the uveitis gains an upper hand, requiring a new immune-suppressant drug and emergency eye surgery recently to decrease fluid buildup in her left eye. And back to more steroids.

As she and I stroll at night down to the park in our Brooklyn neighborhood, she’ll take my arm so she won’t trip on the sidewalk in the dark. The gesture brings me back to my mother, who also had eyesight loss and would take my arm as we walked when I visited her in California. She had gone blind in her last two decades from degenerative macula, no relation to uveitis, a disability that did not stop her from working, reading the newspaper and watching the nightly news, three daily necessities for her.

Isabella asked me if a magnifying glass could help her at the café job (I had bought her a tiny reading light to place near the cash register and she has new eyeglasses), and I recalled how my mother, a widow, had kept working through her blindness, into her late 70s, at a boutique where she lived in Santa Barbara.

She could not see the credit card receipts, either, and carried a magnifying glass to get it right. She wasn’t ashamed to pull out the glass as a customer waited. Her boss may have frowned on my mother’s awkwardness, but she liked her enough to keep her on. She was productive, my mother, an asset to the store. Plus she needed a paycheck.

We take solace that Isabella’s chances are good that her sight will recover once the inflammation recedes and the doctor can laser away the cataracts. For now, her disability has become a large part of her everyday structure, creating consternation about how to proceed, how to overcome the obstacles, how to not let the situation bring her down. She refuses to let the problem stop her ambitions, though, as she proves her worthiness in society.

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