Sterilisation first option for the disabled

by Vince Chadwick
Jan. 2, 2013, 2:30 a.m.

PARENTS of women with intellectual disabilities are going straight for sterilisation procedures rather than ”existing and viable options” to help control menstruation and contraception, a national Senate inquiry has heard.  Associate Professor Sonia Grover, a gynaecologist at the Royal Children’s Hospital, told the hearing she was horrified when she received ”straight-out” requests for hysterectomies. She said increasing access to respite care, helping women manage their periods, and ensuring contraception is in place are options ”so these young women, if they are able, can enjoy a close sexual relationship without risks of pregnancy if they are not able to have a pregnancy and care for a child”.  Under Australian law, parents wishing to sterilise a child or adult children who cannot give consent for non-therapeutic reasons must apply to the Family Court or, in some states, a guardianship board.

However, Dr Grover expressed frustration with the therapeutic test. ”The question really is: Is this a procedure you would do on a non-disabled person?” she said. ”We should not be doing a sterilising procedure if we would not be doing it in somebody who did not have a disability.” The inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia began in September as part of the government’s response to a series of calls from the United Nations for an end to non-therapeutic sterilisation without consent, regardless of disability.  The executive director of Women with Disabilities Australia, Carolyn Frohmader, said options such as family planning and menstrual management were not being explored because the sexuality of young women with disabilities was not widely accepted.

”Parents and other care-givers are not made aware of these or are discouraged from understanding their effectiveness,” Ms Frohmader told a recent hearing in Melbourne.  In one case from Queensland in 2010, an 11-year-old intellectually disabled girl (”Angela”) was sterilised after she began getting her period, which was heavy and irregular, at age nine. Contraceptive pills were ineffective, two gynaecologists reported she would benefit from the removal of her uterus, and a Family Court judge was satisfied less-invasive treatments had been exhausted.  ”I am not a doctor but I am the mother of a nine-year-old child and I found that case very problematic for a whole range of reasons,” Ms Frohmader said.

The inquiry has so far received just five submissions, including one from a parent explaining her wish to have her 27-year-old intellectually disabled daughter sterilised.  ”Her own life is not stable enough to support another life,” the parent wrote. ”Advocates who say she has the ‘right’ to have a child need to factor in her ability to be responsible for that child.”  The author said they had already raised three children, but at 54 did not want to raise their grandchild. ”Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will?”  The inquiry is receiving submissions until February 22 and is due to report on April 24.

http://www.naracoorteherald.com.au/story/1213079/sterilisation-first-option-for-the-disabled/?cs=7

Law and behold, a blind lawyer!

Henna Achhpal

“I start my day at around six and spend time reading on my net book — for work or leisure — before getting ready for work. Breakfast is my most important meal of the day because I sometimes tend to miss my lunch due to work load. There’s no fixed time to reach work, it’s my own office! No two days are the same – on some I may have a client visiting me, on others I may be at court all day. I don’t like to go out on a work day but sometimes end up going for a movie with friends. I also enjoy theatre and travelling.” Sounds like the life of just another urban person? It is, the only bit we’d like to add here that 46-year-old Kanchan Pamnani is visually impaired.

Living with her mother in Malabar Hill, Mumbai, Kanchan was born with low vision which resulted in complete loss of vision over time. She has been visually impaired for over ten years but seems to take this with complete nonchalance, describing her day as if it’s a piece of cake to get through. “It isn’t,” she counters us, “but I didn’t study so much and work so hard to sit at home and cry just because I lost my eyesight.” We note her eloquence and safely guess that it helps her immensely in her profession.

Our search for fascination in this ‘simple’ life Kanchan claims to lead, brings us to her office in the Colaba area. It’s just the week day morning she’s told us about, and she’s making her way from the cab into the building. With a little help, she finds her way to the gate and then takes it on her own. Once in the lift, she tells the liftman, “Eighth floor.” The liftman shuts the door and starts counting, “1…2…3…” Once we reach the first floor, he says, “Here you are, eighth floor!” As she exits, she wishes him a good day and tells us, “It’s our daily joke!”

On her phone while walking toward her office, we can hear her saying, “I dialed your number by mistake but I’m glad to know that your number hasn’t changed in years!” As she catches up with the friend, she shuffles her keys for a few seconds and opens the door. Going around the disorderly room, typical of old law firms in Mumbai, she switches on the lights, air conditioner and settles in her chair ending the chat with a promise to call back soon. We are nearly astounded at this routine, imagining what this multi-tasking would be like blindfolded.

“The whole world takes care of me, you saw for yourself, as soon as I got out of the cab, two men on the street helped me, cabbies are usually friendly too.” But doesn’t it get difficult to trust people, we ask. “It’s simple,” she exclaims, “the world works on trust. You put your hand out there and someone will reach out to help you. If you’re going to constantly doubt and fear getting deceived, you won’t reach anywhere. You must trust the environment around you and have faith in God.”

We’re intrigued at her constant insistence that hers is a ‘simple’ story, and quiz her about the big bad world of law. Surely she doesn’t expect special treatment from her co-councils, judges and clients. “Law is the best profession; after all Lady Justice is blind — the court is one place where blindness is understood!” On a serious note, she adds, “As long as you’re ready and prepared with your work, no one can say anything to you.”

Kanchan wasn’t born blind, and her successful career despite the gradual loss of vision is a story of grit. “I was never able to see clearly. Even when I had low vision, I would just make out if you’re fair or dark, not tell your features. Losing vision wasn’t a sudden, overnight change that I had to adjust to.” She continues, “To me you’re a ghost.. just a voice coming at me! You could be sitting nude for all I care. I tell my colleagues that they can wear whatever they want, I wouldn’t know! Though the day we have to meet a client or go to court — they better come dressed formally.”

Much has been written about the ‘heroics’ of this blind advocate and solicitor at M/S Pamnani and Pamnani, but not many have described her wit and humour first hand. Also, it’s not like her determined multitasking doesn’t have its low points. “There are times when I feel down, when work is not done on time, when I lose a case or when a client is yelling, but I’m never low because of my inability to see. I sometimes get irritated because everything is slower. The speed that I had as a sighted person, it’s not the same anymore. Otherwise, the special softwares on my phone and computer help me tremendously. (Kanchan uses ‘Talks’ on her smart phone and ‘JAWS’ – Job Applications with Speech, on her PC besides audio books to read.) I try not to depend on anyone else as much as I can. If I wanted that, I would get married!”

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

Navigating Love and Autism

GREENFIELD, Mass. — The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as “not like the other humans,” regarded Kirsten Lindsmith with undisguised tenderness.

Autism, Grown Up

Love on the Spectrum

Articles in this series are chronicling the coming of age of a generation of autistic youths. If you are a person with autism or a relative, neighbour, romantic interest or co-worker of someone who is, you can help inform this series. Alex Plank, left, the founder of WrongPlanet.net, for people with Asperger syndrome and other forms of autism, working on an Autism Talk TV segment for the site with Jack and Kirsten.

She was the only girl to have ever asked questions about his obsessive interests — chemistry, libertarian politics, the small drone aircraft he was building in his kitchen — as though she actually cared to hear his answer. To Jack, who has a form of autism called Asperger syndrome, her mind was uncannily like his. She was also, he thought, beautiful.

So far they had only cuddled; Jack, who had dropped out of high school but was acing organic chemistry in continuing education classes, had hopes for something more. Yet when she smiled at him the next morning, her lips seeking his, he turned away.

“I don’t really like kissing,” he said.

Kirsten, 18, a college freshman, drew back. If he knew she was disappointed, he showed no sign.

On that fall day in 2009, Kirsten did not know that someone as intelligent and articulate as Jack might be unable to read the feelings of others, or gauge the impact of his words. And only later would she recognize that her own lifelong troubles — bullying by students, anger from teachers and emotional meltdowns that she felt unable to control — were clues that she, too, occupied a spot on what is known as the autism spectrum.

But she found comfort in Jack’s forthrightness. If he did not always say what she wanted to hear, she knew that whatever he did say, he meant. As he dropped her off on campus that morning, she replayed in her head the e-mail he had sent the other day, describing their brief courtship with characteristic precision.

“Is this what love is, Kirsten?” he had asked.

Only since the mid-1990s have a group of socially impaired young people with otherwise normal intelligence and language development been recognized as the neurological cousins of nonverbal autistic children. Because they have a hard time grasping what another is feeling — a trait sometimes described as “mindblindness” — many assumed that those with such autism spectrum disorders were incapable of, or indifferent to, intimate relationships. Parents and teachers have focused instead on helping them with school, friendship and, more recently, the workplace.

Yet as they reach adulthood, the overarching quest of many in this first generation to be identified with Asperger syndrome is the same as many of their nonautistic peers: to find someone to love who will love them back.

The recent recognition that their social missteps arise from a neurological condition has lifted their romantic prospects, they say, allowing them to explain behaviour once attributed to rudeness or a failure of character — and to ask for help. So has the recent proliferation of Web sites and forums where self-described “Aspies,” or “Aspergians,” trade dating tips and sometimes find actual dates. Lessons learned with the advent of social skills classes and therapies, typically intended to help them get jobs, are now being applied to the more treacherous work of forging intimacy.

The months that followed Jack and Kirsten’s first night together show how daunting it can be for the mindblind to achieve the kind of mutual understanding that so often eludes even nonautistic couples. But if the tendency to fixate on a narrow area of interest is sometimes considered a drawback, it may also explain one couple’s single-minded determination to keep trying.

A Meeting

Kirsten was first introduced to Jack in the fall of 2008 by her boyfriend at the time, who jumped up from their table at Rao’s Coffee in Amherst, Mass., to greet his friend, who was dressed uncharacteristically in a suit that hung from his lean frame.

Jack, it turned out, was on his way to court. A chemistry whiz, he had spent much of his adolescence teaching himself to make explosives and setting them off in the woods in experiments that he hoped would earn him a patent but that instead led the state police and the Bureau of Alcohol, Tobacco, Firearms and Explosives to charge him with several counts of malicious explosion.

By the following spring, he would be cleared of all the charges and recruited by the director of the undergraduate chemistry program at the University of Massachusetts, who was impressed by a newspaper account of Jack’s home-built laboratory. Kirsten’s boyfriend, a popular Amherst High senior, had offered to serve as a character witness for his former classmate, and the three spent much time together that year.

The boyfriend told Kirsten that Jack had Asperger syndrome: his condition may have blinded him to the possibility that the explosions, which he recorded and posted on YouTube, could well be viewed by law enforcement authorities as anything other than the ambitious chemistry experiments he saw them.

But if Kirsten noticed that Jack held himself stiffly, spoke with an unusual formality and rarely made eye contact, she gave little thought to his condition, other than to note that it ran in families: his father, John Elder Robison, is the author of “Look Me in the Eye,” a best-selling 2007 memoir about his own diagnosis of Asperger’s at age 39.

After reading of the intense interests that often come with the condition — the elder Mr. Robison’s passion for Land Rovers, he had written, was the basis for his successful business servicing luxury vehicles — Kirsten and her boyfriend made light: “I have Asperger’s for McDonald’s,” she would joke. But Jack was all too familiar with the book’s more sobering stories, too: about the despair his father felt in his youth as he looked at happy couples around him and his rocky marriage to Jack’s mother, which ended in divorce.

“All these young Aspergians want to know how to succeed at dating,” John Robison told his son after his speaking engagements. And as a high school girlfriend broke up with Jack over the course of that year, Jack began to wonder more urgently about the same question.

Kirsten’s two previous boyfriends had broken up with her, too, and her current boyfriend was an unlikely match — a charismatic extrovert with soulful blue eyes who thrived on meeting new people. But when she admitted at the outset of their senior year in high school that she envied his social ease, he had embraced the role of social coach.

Years of social rejection had made her, in his view, overly eager to please. “People will take advantage of you if you act that way,” he warned. “If you don’t watch out, you’ll be a natural doormat.”

Noting her tendency to speak in a monotone, he urged her to be more expressive. He sought to quiet her hand movements, gave her personal hygiene tips (“You can’t do that,” he told her flatly when she used her fingers to scoop up food she had dropped on a table at Taco Bell and ate it) and pointed out the unspoken social cues she often missed. He elbowed her as she spoke for long minutes to an acquaintance about her interest in animal physiology. “When people look away,” he explained, “it means they’re not interested.”

And sometimes, he was plainly upset by what he perceived as her rudeness. “I can’t believe you did that,” he huffed when his mother asked Kirsten how she was and she did not reciprocate.

Much of the time, Kirsten embraced the tutoring, which he punctuated with unabashed displays of affection. “I love this girl!” the boyfriend once proclaimed, tackling her on his mother’s couch. Diagnosed with attention deficit hyperactivity disorder at age 11, she never heard the word autism. They were convinced that with some effort she could become as socially adept as he was.

But she also chafed at his frequent instructions, which required constant, invisible exertion to obey. And she despaired of ever living up to his most urgent request: that she share her innermost feelings with him.

“Just don’t filter,” he said one night, lying in bed with her.

“It’s like the blue screen of death,” she said, describing her difficulty conveying her emotion with a widely used term for a Windows computer crash. “There are no words there.”

“You’re not a robot,” he insisted, intending to comfort her. “I know you can do this. You’re a human being.”

But not, she thought, the kind he wanted her to be.

In contrast to her boyfriend’s emotional probing, Jack’s enthusiasm for facts — like how far his green laser pointer could reach across the University of Massachusetts campus in Amherst — came as a relief. So, too, did his apparent lack of concern for fitting in. A supporter of President Obama, she found herself admiring Jack’s anti-Obama bumper sticker, which almost invariably elicited angry honks in left-leaning Amherst but once got him out of a ticket.

If Jack had trouble reading Kirsten’s expressions and body language, he also noticed that she had what he considered a perfect smile. On his laptop, he showed her bootleg episodes of his favourite TV show, “Breaking Bad,” about a chemistry teacher turned methamphetamine producer. And on the evenings when he argued libertarian positions with Kirsten’s boyfriend, a liberal Democrat, he often found himself disappointed when she went to bed early.

One afternoon in the fall of 2009 he asked if she was free to meet between classes at UMass, where she was enrolled as a freshman and he was studying chemistry for an associate’s degree. They talked about their childhoods in Amherst, both social outcasts even among their geeky classmates, offspring of academics. Jack’s poor grades reflected the hours he spent reading chemistry Web sites rather than doing homework; one teacher had suggested to Kirsten’s mother, an administrator at UMass, that she would be “a perfect candidate for home-schooling.”

Kirsten told Jack, at some length, of her desire to be a medical examiner. He replied, at even greater length, about chemistry, his interest having shifted from explosives to designing new compounds for medical use. Sometimes, as they circled the campus, she broke in with questions “What’s that?” she wanted to know when his descriptions grew technical, or “Why?” Accustomed to being treated with something more akin to polite fascination when he held forth on his favourite subjects — he often felt, he said, like a zoo animal — he checked to be sure her interest was genuine before providing detailed answers.

Jack, Kirsten noticed, bit his lips, a habit he told her came from not knowing how he was supposed to arrange his face to show his emotions. Kirsten, Jack noticed, cracked her knuckles, which she later told him was her public version of the hand-flapping she reserved for when she was alone, a common autistic behaviour thought to ease stress.

Their difficulty discerning unspoken cues might have made it harder to know if the attraction was mutual. Kirsten stalked Jack on Facebook, she later told him, but he rarely posted. In one phone conversation, Jack wondered, “Is she flirting with me?” But he could not be sure.

But Jack, who had never known how to hide his feelings, wrote Kirsten an e-mail laying them out. And when Kirsten’s boyfriend pleaded with her to tell him what was wrong, she did, sobbing. She could not explain, she said. She knew only that she felt as if she had found her soulmate.

Road Bumps

From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.

Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.

“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.

“Only deep pressure,” she showed him, hugging herself.

He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.

“I’m sorry,” he said helplessly.

They found ways to negotiate sex, none of them perfect. They kept trying.

What mattered more to Kirsten was how comfortable she felt for the first time in a relationship. Even if she did something wrong, she believed, Jack would not leave her. When he remarked on her obliviousness after she chattered on one day about vertebrate anatomy to their neighbour — “Matson was totally bored,” he informed her — there was no judgment, only pride that he had managed to notice. “Is that why he was yawning?” she asked, laughing with him.

She moved out of her dorm and into his apartment that fall. Despite his distaste for her habit of scavenging, he did not complain when she decorated his bare living room with a plastic orange, magnetic trains and a Wolverine action figure rescued from the sidewalk. And when he rejected her suggestion that a cat would make the apartment cozier, she did not push it.

She liked his large hands, with their long, tapered fingers and wide knuckles, and thought he was the most interesting person she had ever met.

“You’re very pretty,” he told her frequently, looking up from his computer on their kitchen table to appreciate her tall, slender frame, her big eyes bright under her dark bangs.

For his part, Jack rejoiced to find that Kirsten did not hold certain social expectations that had caused him anxiety with a high school girlfriend. He apologized, for instance, that he failed to get her a Christmas present because he had not been able to think of what she would like.

“It doesn’t matter,” she said with a shrug. “I can tell you what to get me next time.”

She tolerated his discomfort with public displays of affection, though she pushed for more in private. When he explained that his lack of expression did not mean a lack of warmth for her — he often simply forgot — she devised a straightforward strategy to help him.

“When I put my hand on your leg,” she said, “you put your arm on my back.”

It was the disagreements that spiralled into serious conflicts when they could not understand and, then, find a way to comfort each other that threatened to break them apart. One might start over Kirsten’s request that Jack hug her when she came home from school, or his perception that she was already angry at him when she came through the door.

“The more we argue, the worse it gets,” Jack said once, close to despair.

One night as Kirsten cooked dinner, he peered into the pan where she was sautéing vegetables to comment on the way she had cut the cauliflower.

“It’s too big,” he explained. “It won’t cook through.”

“It’s better when it’s not all mushy,” she insisted.

“No,” he said. “You’re just doing it wrong.”

Eventually, Kirsten, unable to contain her tears, fled to the living room.

“What I want,” she told him when they analysed their clashes in less-fraught moments, “is to be held and rocked and comforted.”

But Jack, believing himself accused of a slight he had not made, could not bring himself to touch her.

He needed to be apart, to cool down.

Once, he had tried to do as she requested, stiffly wrapping his arms around her, against all that seemed natural to him. But when it only seemed to elicit more tears, he did not try again.

Instead, he hovered near her. “Stop crying,” he would say, pacing the perimeter of the small apartment and returning to where she sat.

He could not distract himself at those moments, even with the chemistry entries on Wikipedia, or an old episode of “Breaking Bad.”

The Diagnosis

Looking for clues to fix her new relationship, Kirsten began frequenting autism Web sites like WrongPlanet.net, where hundreds of messages a day are posted. “Eligible Odd-Bods,” read one. Another, “Are relationships harder for Aspies?”

In the library, she paged through autism guidebooks, few of which contained any information about relationships, not to mention sex. But as she read about the manifestations of the condition, she recognized them — and not only in Jack.

A passage about the difficulty that people with autism have reading facial expressions reminded her of being mocked by a friend at age 5 with whom she had agreed to draw “angry ghosts.” The friend’s ghost had zigzag lines for scowling lips and a knitted brow. Kirsten, unsure how to depict anger, had drawn a blank-faced ghost with a dialogue box above its head that read “Grrr.”

In one chapter about the repetitive behaviour and thought-process “ruts” that are common among autistic people, she saw her own difficulty climbing out of her black moods. Many children of her generation who probably had Asperger’s, she read, were misdiagnosed with A.D.H.D. because autism carried more of a stigma. Girls with the condition, one theory went, were overlooked because their shyness was tolerated more and “mother hen” friends might shield them from the worst social isolation, as had happened to Kirsten.

And then there was the characteristic of autism — focusing on a detail rather than the whole — that seemed to define the nit-picky arguments she and Jack had daily, even hourly, it sometimes seemed. There was the one, for example, when they were trying to recount something that had happened at a particular hotel, but could not advance past the semantics of its size.

“The hotel was miles wide,” Kirsten had started. “And — ”

“It was not ‘miles’ wide,” Jack had broken in. “It was maybe an acre, but not a mile wide, I can guarantee it.”

“I don’t think you can guarantee it,” she had retorted — and so on.

These fights, which Jack had dubbed “Aspie arguments,” were not soul-sapping, like the ones where he could not comprehend her need for a certain kind of comfort and she could not abide his inability to give it. But the cumulative effect was exhausting. It had been Jack’s similar escalation of arguments with his father that had prompted John Robison to send him to the therapist who gave him the Asperger’s diagnosis at age 15.

No prescription would come with a diagnosis, Kirsten knew. The only drugs for autism treated side effects, like depression or anxiety; she already had medication for A.D.H.D. It might help her get more time for assignments at school, where the constant effort of social interaction sometimes left her drained and struggling even with tasks that should be easy for her. But mostly, she wanted to know if there was an explanation for the awkwardness that had plagued her for so long.

Her answer came in the fall of 2010, the result of a six-hour battery of questionnaires and puzzles and a visit with a psychologist. “Lack of awareness of self-impact,” the report read. “Diminished expression of ordinary social graces.” She had left, the doctor wrote, “without a parting word.”

Many others with the same diagnosis, she knew, were more impaired than she. In online forums, she encountered sceptics who saw Asperger’s as an excuse for rudeness — or, worse, a means of pathologizing essentially normal behaviour and diverting resources from those who were truly challenged. Her ex-boyfriend, she suspected, felt similarly about her own diagnosis when she reported the news.

But Kirsten took heart in the official acknowledgment and the community it made her a part of. She changed her account setting at WrongPlanet.net from “undiagnosed” to “Asperger syndrome” and persuaded her mother to pay for a therapist who specialized in treating people on the autism spectrum.

And between classes one day in the library that fall, she read the first chapters of “Thinking in Pictures,” the autobiography of Temple Grandin, the autistic animal scientist whose life story was made into an HBO movie. Kirsten, too, had always thought in pictures.

People with autism, Dr. Grandin suggested, can more easily put themselves in the shoes of an animal than in those of another person because of their sensory-oriented and visual thought process. Suddenly, Kirsten yearned for the kind of uncomplicated comfort and affection that came with a small furry animal.

She would talk to Jack again about a cat, she thought, closing the book.

A Meltdown

Kirsten’s diagnosis brought her closer to Jack.

Alex Plank, 25, the founder of the WrongPlanet Web site, also had Asperger’s and had enlisted Jack in the production of Autism Talk TV, featuring video interviews with autism experts.

Kirsten now joined them, and as they travelled to conferences, Alex’s tales of his own romantic ups and downs — echoed by many on his Web site — gave them perspective on their own dramas. “It’s easy for me to get a girl’s number,” he told them. “I can build attraction. But attraction isn’t enough.”

Still, Kirsten’s wish for more physical affection from Jack was proving harder to manage. Once, during a family gathering at his father’s house, she saw Mr. Robison put his arms around the woman he had been dating and would soon marry. That, she thought with a pang, was more than Jack would do unprompted even if there was no one around.

If she didn’t ask him so much, he would do it more, Jack countered. Didn’t she understand how fake it felt when he knew he was “supposed” to do it?

Yet when the opportunity arose to date other people, they did not take it. This past spring, a male student sitting next to Kirsten in anthropology class passed her a tic-tac-toe board he had drawn during a lecture. She played along, but when he asked her, “Do you have a boyfriend?” she replied, “Yes,” and that was the end of it. Nor did Jack, asked to lunch by his female lab partner, show any interest.

But at Fox Lane Middle School in Bedford, N.Y., where Jack and Kirsten, now Internet mini-celebrities, were invited to speak about autism, the staff asked them, “Have you ever thought about dating each other?”

“We’re so platonic,” Kirsten complained to Jack later. “They didn’t even know.”

Nor was she the only one now craving affection. “Why do you pet Tybalt more than me?” he asked after a visit to her mother’s house, referring to the family dog named for the Shakespeare character.

The talk about the cat, when she raised the issue again last spring, was not much of a talk. He was allergic, Jack told her. And the apartment already felt too small. It was obvious to him that it made no sense.

Yet he had grown up with a cat, Kirsten pointed out. His allergies were not so bad. She could keep him supplied with Zyrtec. If he wouldn’t hold her when she was sad, at least she could cuddle a cat.

It was obvious to her, too.

“I don’t want to talk about it anymore,” Jack told her.

They could both see the meltdown coming. This time, as she huddled, sobbing, in a chair in the living room, he stretched out next to her on the couch.

“Go in the other room,” she told him. “You don’t have to be here.”

But he wouldn’t leave.

Exploring Therapies

Jack and Kirsten considered autism a part of who they are, and fundamental to what drew them to each other.

But for a time this past summer, Jack became captivated by the idea of designing an empathy drug. On the nights when he was not manipulating the virtual economy of the computer game Eve Online, which he often played late into the night after Kirsten had gone to bed, he read all he could find on the hormone oxytocin, which has been linked to trust and social interaction.

A small study suggesting that some of the social difficulties associated with Asperger syndrome could be relieved temporarily by inhaling an oxytocin nasal spray had generated media interest the year before.

But to Jack, the more interesting possibility was a drug that worked on the same principle as the popular antidepressants called S.S.R.I.’s, whose effect could last considerably longer than a spray.

“I’m sure people are working on it,” he told Kirsten, showing her an obscure Wikipedia entry he had found on the subject one night. “But no one’s published anything so far as I could tell.”

He explained, in his animated way, why the chemistry should work, and also, why it might not.

Then he paused.

“I wonder if I took it, whether I would be better at being affectionate,” he said.

“I wonder,” she said, “what effect it would have on me.”

They had both undergone a different experimental treatment, for a study at Harvard Medical School. Jack’s father believed that earlier studies with that procedure, which delivered current to areas of the brain, had given him a temporary insight into other people he had not had previously. But they had noticed no such effect on themselves.

And Kirsten had been working hard with her own therapist to develop strategies for soothing herself. When she found herself in a bad-mood rut, she had agreed with her therapist, she would visualize Twilight Sparkle, the nerdy intellectual character in the animated children’s show “My Little Pony” — of which her knowledge bordered on encyclopaedic and whose goofiness made her laugh. She also kept a list of “twisted thoughts” that she sought to resist when they came, like her tendency to presume Jack was angry when he was making a neutral observation.

“I think it’s helping,” he told her.

A cat, she thought, would help more. In recent weeks, she had been showing him irresistibly cute pictures of kittens from a forum on Reddit.com called “aww.” But she did not mention the cat that night. Instead, she asked if he would come to bed with her rather than staying up to play Eve.

“Will you pet me if I come to bed?” he asked.

She agreed.

Giving Ground

Around Thanksgiving, Jack began to think that he should let Kirsten get a cat. Maybe he would keep the idea a secret, he thought, and make it a Christmas gift. He wasn’t sure.

But Kirsten, taking matters into her own hands, stopped by the animal shelter one day to see if it was possible to get a hypoallergenic cat.

There is no such thing, she told him on arriving home, but females, the shelter staff had told her, are less allergenic — so perhaps that was an option.

“Forget it, then,” Jack said absently.

He had not meant it as a final word. But Kirsten, feeling tears welling up, employed one of the new strategies she had discussed in therapy: going out for a drive, rather than wallowing.

Jack called on her cell phone almost as soon as she pulled out of their street.

“What are you doing?” he asked. “Are you — leaving?”

Trying to control her voice, she said nothing. And then, she managed, “No.”

She was driving into Amherst, hoping to see a friend.

In the apartment alone, he paced, the phone to his ear.

“Kirsten,” he said. “Just come back. We’ll get the cat.”

He did have one requirement: it had to be able to chase a laser pointer.

Dating Advisers

On a day early this month, before their planned trip to the animal shelter, Kirsten and Jack stood before a group of young adults with autism at the Kinney Centre for Autism Education and Support in Philadelphia, answering their questions while Jack’s father addressed their parents in a different room. “Did you ever think you would be alone?” one teenager wanted to know.

Kirsten answered first. “I thought I was going to be alone forever,” she said. “Kids who picked on me said I was so ugly I’m going to die alone.”

Her blunt tip on dating success: “A lot of it is how you dress. I found people don’t flirt with me if I wear big man pants and a rainbow sweatshirt.”

Then it was Jack’s turn to answer, in classic Aspie style. “I think I sort of lucked out,” he said. “I have no doubt if I wasn’t dating Kirsten I would have a very hard time acquiring a girlfriend that was worthwhile.”

A mother who had slipped into the room put up her hand.

“Where do you guys see your relationship going in the future?” she asked. “No pressure.”

Kirsten looked at Jack. “You go first,” she said.

“I see it going along the way it is for the foreseeable future,” Jack said.

One of the teenagers hummed the Wedding March.

“So I guess you’re saying, there is hope in the future for longer relationships,” the mother pressed.

Kirsten gazed around the room. A few other adults had crowded in.

“Parents always ask, ‘Who would like to marry my kid? They’re so weird,’ ” she said. “But, like, another weird person, that’s who.”

The Cat

The next morning, Kirsten woke up from a nightmare: they were late to get the cat, and she couldn’t reach Jack. She was riding a motorbike with pedals in weird places, and she couldn’t find the animal shelter.

In fact, they would have just enough time to reach the shelter before it closed after getting breakfast and buying a laser pointer with a lower-intensity red beam than his green one to test the prospective adoptees. In the car, Kirsten noticed a blinking “E” on the gas gauge, and the couple had the following exchange:

Kirsten: Oh, we need to get gas. Do you want to stop at the 7-Eleven?

Jack: No, we’ll stop on the way back.

Kirsten: How can you not get stressed when that thing is blinking?

Jack: I’m not intimidated by liquid crystal displays.

Kirsten: You know what I mean, you get anxious about everything.

Jack: I know we have at least 20 miles of gas.

Kirsten: We have to drive seven miles there, and then seven back.

Jack: No, we have three miles back.

Kirsten: Should we just stop at 7-Eleven?

Both of them breathed a sigh of relief when the only female kitten at the shelter pounced without hesitation on the red laser beam Jack shined into her cage. At home, however, she ran straight under the old-fashioned bathtub.

Jack bent down and scooped up the kitten, holding her up to the mirror above the sink. Kirsten stroked her black fur in his arms, their hands touching briefly across the kitten’s back, and in the reflection.

“Are you looking at yourself in the mirror?” Jack asked the kitten. “Are you smart enough to recognize yourself?”

They stood for a moment together, awaiting the reaction.

Postscript

This article has been revised to reflect the following correction:

Correction: December 30, 2011

An article on Monday about Jack Robison and Kirsten Lindsmith, two college students with Asperger syndrome who are navigating the perils of an intimate relationship, misidentified the character from the animated children’s TV show “My Little Pony” that Ms. Lindsmith said she visualized to cheer herself up. It is Twilight Sparkle, the nerdy intellectual, not Fluttershy, the kind animal lover.

New York Times

Dwarves in Philippines plan to build colony where they can live in peace

Alejandro Doron

Alejandro Doron, one of Manila’s many dwarves, hopes to escape daily harassment and ridicule by starting a dwarf-only community on a plot of land in Manila

Alejandro Doron Jr, left, hopes that the Philippines government will help with his plans to create a colony that would also become a tourist attraction. Photograph: Kate Hodal

With his jet-black hair, golden skin and hazel eyes, Alejandro Doron Jr is the sort of man who regularly stops people in their tracks. He may be good-looking, but he knows why people stare. He’s small – 117cm (3ft 10in) small, in fact.

As one of Manila’s many unanos or dwarves, Doron hopes to end the harassment he faces daily by starting the Philippines‘ very first little people colony.

The 35-year-old bartender works at Manila’s only "dwarf bar", the Hobbit House, where he and his colleagues, ranging in height from 76cm to 135cm, serve tourists Hefeweizen beer and New York ribeye steaks, as dwarf comedians and Elvis impersonators perform on stage.

Just a 10-minute drive away, in the red light district of Makati, other dwarves don gold-and-black Speedos to perform in oil wrestling matches. Still others undress for fascinated sex tourists.

While there are no official figures for the Philippines, dwarfism – of which there are more than 200 distinct varieties – is generally defined as being 147cm or shorter.

The most common condition, achondroplasia, is thought to affect around one in 25,000 people.

Manila’s community of little people are highly visible because many of them have come to the capital to find both work and each other, says Doron.

"Otherwise, they are like me: the only dwarf in their village," vulnerable to both physical and verbal abuse.

Critics have questioned whether dwarf-specific jobs such as Doron’s are exploitative, but for many little people in the Philippines, such work can be a godsend.

While Filipinos are, on average, of short stature (163cm for men and 152cm for women), a minimum height requirement of 157cm exists for many jobs.

"I’m a computer programmer by profession, but even if you have a good resumé and meet the job qualifications, [potential employers] say there’s a height restriction, so they can’t hire you," says Jonathan Cancela, 30, who, at 142cm, has worked for the past few years as an oil wrestler at the Ringside bar.

The Philippines has had a longstanding fascination with little people, popularised in the 1970s by TV shows and films on dwarf boxing, wrestling, comedy and kung fu.

Even today, if a little person is the only dwarf in the immediate family, which occurs in about 80% of cases worldwide, popular Filipino legend dictates that the mother must have been watching "dwarf TV" while she was pregnant.

Such an interest in little people means that many of them, at least in Manila, have plenty of work. Doron often dons fancy dress to play leprechauns and monsters for TV shows, children’s parties and even so-called Snow White weddings. He also recently starred as a cross-dressing, papal-robed shaman in the film Son of God.

At the three-storey squat he shares with 11 others – including his own family and that of his sister’s – Doron slowly sips a glass of cola while his partner Olivia Fernandez, 38, who is 157cm, rocks their one-year-old baby in her arms. Of their five children, two are dwarves. Fifteen-year-old Rina has taken the day off from school for fear of bullying.

"Some boys wanted to cause a rumble, so I am home," she says quietly, standing at 86cm.

"It is hard for me – people say I’m small, they shout at me. But I just go to school to learn more about life."

Fernandez says she has faced opposition from both friends and family over her relationship with Doron; and seven-year-old daughter Glysdi, also a dwarf, gets so much verbal abuse that "she is always crying".

"I told them, if people talk about you, don’t listen to what they say," says Doron, who left secondary school early due to harassment.

"But it’s hard. It’s the natural attitude of the people … I prayed that all my kids would be normal, but I have no choice – this is what God gave me."

Being free from this constant abuse, says Doron, is the reason why he and about 30 other dwarves are planning to establish a colony.

An investor has donated 16,000 sq m of land near Manila, though the fields still have to be cleared, the houses built, and the businesses started.

But money is tight, and Doron hopes that local politicians will help with funding and that the colony will one day become a tourist hotspot.

So-called dwarf towns have existed in the past – in Coney Island at the turn of the century and more recently in Kunming, China – but not everyone agrees that they help in the long run.

"The answer is not segregation," says Gary Arnold of the charity Little People of America.

"The answer is raising awareness about differences and doing all we can to promote communities that embrace and are inclusive of all differences."

Dressed in children’s jeans and a T-shirt, Doron slowly winds his way back to work through alleys crowded with caged roosters and stray dogs.

A neighbour, wiping away the afternoon’s heat with a handkerchief, cackles loudly as he passes. "Ooooh!" she laughs. "There goes the dwarf!"

Doron turns and smiles at her, then continues deliberately on his way.

The Guardian

Call for submissions: Anthology Of South Asian Queer Erotica [title forthcoming To be published by Tranquebar Press in 2012

Please circulate widely and also write a story!

The spaces for expressing queer concerns have increased across South Asia in the last decade. Much is being written about sexuality, rights and queer lives. Yet, in all of this, sex itself doesn’t get written about very much and there is a dearth of queer erotica from South Asia. Contemporary queer erotica with a South Asian focus would make these queer lives apparent in newer and compelling ways. This anthology is an attempt to present queer, sexual, regional literature that pleasures and satisfies. It is about queer sex lives, erotic experiences and passions. Queer in this anthology represents non-normative genders, sexualities, lives and perspectives. It aims to bring out voices that have been limited to smaller groups or never heard before.

What we want:

We want stories of queer love, lust and craving. Sex, however you may define it, should be a big part of the story. We want gender play, auto-eroticism, dark fantasies, monogamous and non-monogamous sex, stories of bondage, domination, sadism and masochism. We are looking for stories of deep passions, stories that complicate sex. We want stories of desire, fulfilled and unfulfilled. Stories that defy the gender binary. Stories of how you sexed up your aids and appliances. Stories on masturbation or the pleasures of paid sex. Stories of how you steamed up a bus ride, ended a clandestine affair or fucked with sex toys. Share with us stories that confront, redefine, dispute and reclaim what sex is. Let your stories queer erotica itself.

We invite you to write short stories with South Asian themes, characters and places reflected in them. We are looking for a wide expression of experiences across age, region, class, ability, gender and sexual identities. Stories can be fictional, semi-fictional and non-fiction, but we are not looking for academic or solely autobiographical writing on sexuality. Your stories will shatter the silences around queer erotic lives and encompass their diversities, so let us have them.

Who can write:

We want to foreground the queer voices of people living in or originally from South Asia. Queer includes but is not restricted to identities like lesbian, bisexual, gay, transgender, intersex, hijra, kothi, questioning, gender-queer, gender fluid and pansexual. Authors do not necessarily have to identify with one or more of these identities but the stories they submit should reflect non-normative genders, sexualities, lives and perspectives.

How to submit:

  • We are looking for short stories with a word limit of no less than 3000 words. We regret that we are unable to include poetry.
  • All submissions should be in English. Translations from other languages are allowed as long as the author owns the rights to the translation as well.
  • Please submit the story as an email attachment on a word document. Please include a title and word count.
  • Do not include your name or any other identifiers in the word document. As we are using a blind submissions process, we will have to reject submissions that indicate the author’s identity in the body of the story.
  • Authors will be informed whether their work is selected by mid-October. At that time, we will request you to provide a name under which you wish to be published and a short bio.
  • All selected authors will receive a one-time payment. The copyright of the story will remain with the author.
  • The deadline for submission is 15th September 2011.
  • Send your stories to queerotic.stories@gmail.com

Now get writing about the kind of sex you have wanted to read about. And get us swooning!

About the editors:

Meenu is a queer feminist activist. She has been involved with issues of gender and sexuality through women’s rights organisations and autonomous collectives for the last six years. She lives in Delhi and is an avid reader of erotica.

Shruti is currently based in Bombay. In the last eight years, she has actively engaged with the women’s and queer movements in the country. Over the years, she has worked as a researcher, social worker and counsellor.

“You move forward in life with your intellect and thoughts, not with your legs,” Neeta Panchal

I first saw her when she wheeled herself into the coffee shop of the hotel I was staying in Ahmedabad. She and her husband made an interesting sight! People who had come down for dinner stopped in their stride. Her husband on crutches with their baby boy in a sling tied on his chest and she following on her wheelchair. It was endearing, if not anything. And then when she starts talking and you get to know her, you realise she is a bundle of energy with a zeal for disability rights. Her vivaciousness is infectious. Meet Neeta Panchal of Disability Advocacy Group, Gujarat as she shares her story with Dorodi Sharma of D.N.I.S.

D.N.I.S.: You acquired your disability when you were barely 17 years old. Can you tell us about the incident?

Neeta Panchal: It was during the huge earthquake that ravaged Gujarat on Republic Day in 2001. I was 17 years old at that time and was on my way to school along with 7 other girls. Suddenly, the earth shook. Since we stayed very close to the Pakistan border, we thought that it must be a war that had started. Unknowingly, we rushed into a building to escape what we thought was a bombing, only to realise that the whole building was crumbling down on us. My friends died. I was caught between two of them but somehow I survived.

I was trapped in the rubble for more than four hours. When they were pulling me out, I couldn’t feel my legs anymore.

D.N.I.S.: How did you overcome the trauma?

Neeta Panchal: It wasn’t easy. When the doctors kept telling me that I had been badly injured and that I was paralysed waist down, I was still hopeful. I thought I was in a hospital after all and I would get well soon. Finally after spending more than a year there, I realised that this was serious, that I would not be able to walk ever again in my life. It shook me. I went into depression. At that time I was also engaged to be married. When the boy’s family found out that I had become disabled, they broke off the engagement. I tried to commit suicide twice. Luckily, my family rallied on to get me out of that mindset. My brother especially. He showed me Sudha Chandran’s film called ‘Nache Mayuri’ which is her story about being a dancer despite losing one leg. Slowly, I came out of my depression. I realised that if God has saved my life, He probably had a reason.

D.N.I.S.: How did you decide to join the sector?

Neeta Panchal: That happened much later. The earthquake had taken a toll on my family. I lost my sister and grandmother. We lost our house and all our belongings. We had nothing. To top that, my family suddenly had to look after me. I did not want to be a burden. So I started a small shop of imitation jewellery and then moved on to open a P.C.O. By this time, I was friends with my disability. In 2004, I participated in the National Para Games in Bangalore and won a silver medal in wheelchair race. In 2006, I won the gold medal in the same event. It was only after I came to Ahmedabad that I entered the disability sector.

D.N.I.S.: You have a very interesting love story – almost straight out of a romance novel. Please do share how it all began.

Neeta Panchal: Well, Handicap International (H.I.) conducted rehabilitation camps in Kutch after the earthquake – teaching us basic daily activities, etc. I had several surgeries after the earthquake (Neeta has had 22 surgeries till date and calls the operation theatre her ‘home theatre’!). I needed to come to Ahmedabad for one such surgery. I did not know anyone here and my family was also from a very simple background and was not sure about managing things in a big city. I sought H.I.’s help. Parag (Panchal) who works with H.I. was asked to help me. That’s how we met and fell in love in the hospital.

But our families were dead against this match. Parag’s family because I was more severely disabled than him (Parag is orthopaedically impaired because of polio) and mine because they did not know anything about Parag. We went ahead against our families’ wishes and got married in the hospital on May 25, 2006.

D.N.I.S.: Did you families reconcile to this? Were there any problems?

Neeta Panchal: Our families reconciled to our marriage but there were other problems. My in laws’ house was not accessible. Parag walks with the help of crutches and he could move around the house. I am a wheelchair user and there were places within the house which were inaccessible. We had to get a place of our own. We spent all our money on it. There were days when we did not know where the next meal was coming from.

D.N.I.S.: You also have a two year old son. Being a paraplegic, what difficulties did you face during your pregnancy?

Neeta Panchal: Several doctors told me I was crazy to think of conceiving. Finally I went to a doctor in a Government hospital. I told him that he does not need to worry about my decision and asked him to guide me through my pregnancy. I was confident that I could have a baby like any other non-disabled woman. It was not easy though. The delivery was even more difficult. There were some 20 plus doctors in the operation theatre. But inspite of everything, today I am a proud mother.

D.N.I.S.: How did Disability Advocacy Group (D.A.G.) happen?

Neeta Panchal: Parag works at H.I. and I also got involved with a lot of activities that they do. We soon realised that there was no forum for people with disabilities in Gujarat. There were big organisations working for disabled people while the latter were just ‘beneficiaries’. A group of us decided to form a platform which any person with disability can access. That is how the idea of Disability Advocacy Group (D.A.G.) happened. It was established with H.I.’s help and support. It was an informal network for a few years till we finally registered it in 2009. We now have 2,400 members across Gujarat. Everyone at D.A.G. comes in her/his individual capacity. We do not believe in the tag of an organisation. Our only identity at D.A.G. is that we are people with disabilities.

J.L. Nakum of Jamnagar is currently the President and I am its Secretary.

D.N.I.S.: What does an average day in Neeta Panchal’s life look like?

Neeta Panchal: Very ordinary! I have made my entire house accessible. I do all my household chores from cleaning to cooking on my own. D.A.G. does not have an office yet. I do all my D.A.G. related work from home. Doctors keep telling me to slow down – I still have a lot of health issues but then I got to do what I got to do.

D.N.I.S.: Any message for our readers?

Neeta Panchal: I think disability is in one’s mind. I have learnt a lot in the last 10 years. I was a simple girl from a remote part of Gujarat. Today I have participated in so many national and international events and have got to meet so many interesting people. I couldn’t speak anything but Kutchi language earlier, today I speak Hindi and broken English. I have come a long way. Of course, all this would not have been possible without the support of my family, my in laws and my husband. People today look upto me as a role model. What more can I ask? Zindagi me pairon se nahin, dimag se chalna! (You move forward in life with your intellect and thoughts not with your legs.) Everything happens for good.

DNIS

Disabled, gay, and as normal as you

Being disabled and finding your place in ‘normal’ society is tough. But for those who are both disabled and gay, getting ‘accepted’ is doubly difficult. Uttarika Kumaran meets Dinesh Gupta, a homosexual suffering from osteogenesis imperfecta

DNA Uttarika Kumaran

On Saturday, at the Queer Azadi March in Mumbai, thousands from the Indian LGBT (lesbian, gay, bisexual and transgender) community poured onto the streets to show the city once again — lest it forgets — that they exist. But 37-year-old Dinesh Gupta opted out. “I doubt I’d have been able to walk that far or for that long,” he says. Dinesh was born with a genetic disorder called osteogensis imperfecta, which causes bones to break easily, often with little or no apparent cause. His first fracture was when he was two-months old, and by the time he was 13 Dinesh had suffered 14 fractures on various bones below his waist. One of these fractures left him disabled. But once he reached puberty and his bones matured, the fractures stopped.

Only, something else happened. Dinesh began to feel a distinct attraction towards men and realised he was gay. “The same hormonal changes that halted the fractures also aided my sexual development. In a way, I’ve always felt I am alive because I’m gay.”

Shared history

Historically, both the gay and the disability rights movements have stemmed from a common resistance to what is considered ‘normal’ in society. By challenging the acceptance of heterosexuality as the norm, people with alternate sexualities often claim to be ‘socially disabled’. Disability rights activists too have struggled to overturn barriers that give preference to a particular social construction of the body. At times, the two movements have crossed paths. In 1983 in Minnesota, US, Karen Thompson began an eight-year-long battle to gain access to her live-in partner Sharon Kowalski who was disabled after a car accident and remanded to the guardianship of her parents who denied Thompson visitation rights. With support from the gay and disabled communities, Thompson finally acquired legal guardianship of her partner in 1991.

In India, the concerns of the gay and disabled movements have been independent of each other. Popular culture too has seen very few and narrowly explored meeting points. In 1964, the Hindi film Dosti, directed by Satyen Bose, portrayed the friendship between two boys rejected by society — one blind and the other a cripple, and has since been appropriated in queer readings of Hindi cinema as a metaphor for homosexual repression, but nothing more.  It was another Hindi film in 2008, Dostana that threw homosexuality into the limelight and convinced Dinesh to come out. The media lapped up his story, but neglected to ask a crucial question — does being disabled colour his experience as a gay man? 

Bare truths

Being practically bed-ridden while growing up, it took years before Dinesh could confront his sexuality. Studying at home, he completed his graduation and later underwent a surgery that greatly improved his mobility. It was at 26, when he started to venture outdoors on his own that he began to meet men and slowly gain confidence.  Despite the relative openness regarding alternative sexual behaviour in Indian society after the 2009 High Court ruling, there has been a stony silence about sexual practices  among the physically disabled. In a society where beauty is held in utmost regard, the physically disabled are at an immediate disadvantage. Priti Prabhughate, research director, Humsafar Trust, says, “Even among able-bodied people in the gay community, self-esteem over body image seems to be an issue. For the disabled gay person, it can be doubly difficult.”

Dinesh says matter-of-factly, “I’ve never had a gay partner. Some are bisexual. Many claim to be straight and say they choose to be with me for a short while out of pity. Even if that’s true, I’m okay with it because I do have physical needs.” Dinesh maintains that he would prefer an able-bodied partner over a disabled one.

Invisible men

“I would like to reach out and tell my story so that more people like me know they’re not alone. I applied to get on Sach Ka Samna but they didn’t select me. Then I wanted to be on Raaz Pichle Janam Ka. I’m still waiting to hear from them,” says Dinesh.  In March 2006, while still in the closet about his sexuality, Dinesh read about Manvendra Singh Gohil, the prince from Gujarat whose coming out made headlines across the world. In August the same year, Dinesh attended his first community programme at Humsafar Trust, a networking and advocacy group serving the needs of the MSM (males who have sex with males) and transgender communities in Mumbai. He says, “I felt immediately accepted. I heard their stories. I wasn’t aware there were so many like us out there.” Yet, five years on, Dinesh has yet to meet another gay man with a disability like his.

Unlike the emergence of gay icons and the concept of ‘gay pride’ that have given the queer movement media visibility, the disability rights movement has failed to generate the same curiosity. “Forget media visibility, Mumbai is among the most disability-unfriendly cities,” says Rohini Ramkrishnan, researcher at the Disability Research and Design Foundation, “How often do you see a physically disabled person comfortably using the train or bus? Right now, it’s like they don’t exist. We just put them in rehab centres and pretend they’re not there.”

United, we stand “Disability points to an obvious bodily impairment which influences every aspect of one’s interaction with society. The experience of homosexuality is not as disabling on an everyday basis,” explains Srilatha Juvva, associate professor, Centre for Disability Studies and Action, TISS.  Other disability experts feel that the immense cost of making structural adjustments — such as installing ramps in public places — has resulted in their rights being ignored, including rights pertaining to sexual health. “I feel that the government’s HIV efforts don’t consider how a physically disabled person has sex. How then will you tell him/her to be safe?” asks Prabhughate of the Hunsafar Trust.

One of the main reasons for the success of the queer movement has been the alliance of sexuality and gender-identity based communities under one umbrella-term called LGBT. A similar model in the disability rights field, especially in the wake of the framing of the UNCRPD & Disability Act 2010, seems the need of the hour. In the meantime, ask Dinesh whether he identifies with his gay identity or his disabled one, he replies, “I’m proud to say I’m gay.” Some day, he might be proud to say he’s disabled too.

DNA

Rejig of discrimination laws should enshrine equality for all

DOMINIQUE ALLEN
May 3, 2010

The government needs to back its words on human rights with action.

THE Rudd government recently said it would review the four federal anti-discrimination laws with a view to merging  them into a single act.  The review could be the most significant aspect of the government’s new  human rights  framework – but only if the outcome is a law that will effectively tackle inequality. Australian law has prohibited discrimination for more than 30 years. These laws have eradicated the most overt forms of discrimination. Women can’t be prevented from applying for jobs based on gender. People can’t be removed from a pub because of their race. We cannot afford to be complacent; by no means do we live in an equal society.  Women’s participation in the workforce is 58.7 per cent, compared with 72.1 per cent for men, most women work part-time and many industries remain highly segregated. Race discrimination persists. We only have to think of the recent attacks on Indian students in Melbourne or the fact that indigenous people experience a standard of living well below that of the non-indigenous population. A recent ANU study found that a job applicant with a non-Anglo-Saxon sounding name will find it much more difficult to  get a job interview than an applicant with one. People with a disability face many obstacles in accessing buildings,  services and public transport.

The reason for this discrimination is dealt with case by case. There is no institution, like the ACCC or the Ombudsman, that can make sure that people are given a ”fair go” at work or school, or in the services they receive. It is up to victims to do something about discrimination.  If I am discriminated against by a potential employer because I am female and likely to have children soon, my only option, apart from trying to sort the matter out with the employer, is to lodge a complaint with the Australian Human Rights Commission. The commission will arrange a conciliation conference for the parties and we’ll try to resolve the issue. The chances are we will. We’ll spend a few hours discussing what happened and I’ll walk away with a small financial settlement in return for not going to court and keeping the matter confidential. That will resolve the issue for me, but what if there are other women in the workplace who have had a similar experience? What about other employers who are considering doing the same thing? Will my complaint deter them?

The answer is that the system can do little to help people in a similar situation to mine, or to discourage potential discriminators. If the Rudd government simply decides to combine the race, sex, disability and age discrimination acts under one umbrella act, nothing will change; Australia will continue to tackle discrimination in a piecemeal fashion. There is another option. The government could commit to actively tackling inequality and introduce the legal tools to achieve it. This is not a novel idea. Other countries have been doing it for decades. In the US, at least since the Kennedy administration, government contractors have been required to take action to ensure their workforces are  representative, or they risk being ineligible for government contracts. In Northern Ireland, specific employers have been required to achieve fair participation of the Catholic and Protestant communities in the workforce since 1989. South Africa introduced similar requirements to remedy decades of apartheid. In Britain, equality is promoted beyond employment. Public authorities have to consider the need to promote equality of opportunity based on race, gender and disability when carrying out their functions. This meant that when the Department of Health became aware that diabetes was prevalent among Britain’s Afro-Caribbean community, it made sure that its national framework for  tackling diabetes took the needs of that community into consideration. The Rudd government could also follow Victoria’s lead. Just last month, the Victorian government introduced laws that will enable the Equal Opportunity and Human Rights Commission to launch investigations into persistent or entrenched discrimination, rather than relying solely on victims to do something about it. Following an investigation, the commission will work with the organisation to resolve the issue.

The organisation may only need to change its behaviour or it may agree to something more comprehensive, such as developing an action plan to eliminate discrimination. Australian governments were once leaders in promoting equality and protecting human rights on the international stage. Let’s not forget that South Australian women were the first women worldwide to be extended the franchise as well as being allowed to stand for election. The Rudd  government recently reasserted Australia’s commitment to protecting human rights by becoming one of the first countries to sign the Convention on the Rights of Persons with Disabilities. It’s time for this government to bring that commitment to equality home by introducing laws that actively promote equality and give substance to the catch cry, a ”fair go” for all.

Dr Dominique Allen is a research fellow at the Institute of Legal Studies, Australian Catholic University.

Braille Porn magazine launched for blind People

April 13: A porn magazine has been launched for blind people – with saucy Braille and raised pictures of nudes. The book was designed by
Lisa Murphy and is called ‘Tactile Minds’.

Among the 17 raised images include a naked woman in a 'disco pose',

Among the 17 raised images include a naked woman in a ‘disco pose’, a woman with ‘perfect breasts’ and a ‘male love robot’ It costs £150
and there are 17 images for people to touch including a woman in a disco pose and a man showing his six-pack. Founder Lisa Murphy, from Canada, spent two years putting it together.  Ms Murphy said that she made the book to fill a gap in the market, adding: “There are no
books of tactile pictures of nudes for adults.  “We’re breaking new ground. Playboy has an edition with Braille wording, but there are no pictures.”  She said that she made the book after realising that the “blind have been left out in a culture saturated with sexual images”.  Between 1970 and 1985 Playboy printed copies of its famous magazine in braille – but without raised pictures.

Posted by Aqeel Qureshi

My ‘Raid de Himalaya’ experience: Deepa Malik

Deepa Malik is no stranger in the field of disability sports. A paraplegic with a strong resolve, she has won numerous accolades for her participation in various adventure sports. Whether it is swimming against the strong Yamuna current, or riding a special bike or even taking a shot at the Paralympics, she has done it all! Last October, she became the first paraplegic to participate in the toughest car rally, the ‘Raid-de-Himalaya’. In a tell-it-all with D.N.I.S., Malik shares her experience with disability and what it took to take the long and arduous Himalayan road.

Deepa Malik

Deepa Malik

I was not born with a disability. After 30 years of regular life, I became a wheelchair user due to three spinal surgeries for repeated tumors resulting into spinal cord damage and paraplegia. I could easily compare the two worlds, that of able bodied people and that of the physically challenged. I had the maturity to feel that a lot could be done in the field of disability in our country, starting from social outlook, acceptance of disabled, to their inclusion into the mainstream.  I noticed that wheelchair users mostly remained at home. I felt a need to generate motivation among them, so that they live a more wholesome life. This inspired me, and I set out on a mission called ‘ability beyond disability’ in my own little way. I had no clue what I had to do. But I felt that I had to contribute in some way or the other. Promoting outdoor sports I felt was the best possible way. And then to my horror, I found out, that I was the first paraplegic woman to join the world of sports in the Indian scenario!

Driving was another of my passion. So much so, that I often laugh that God probably misinterpreted my desire of ‘being on wheels’ and therefore made me sit on a wheelchair! I had always wanted to rally but somehow, I was made to believe that my this desire would never be fulfilled in the present life because of my disability. That only strengthened my resolve and I decided that I must take part in the world’s highest and toughest car rally ‘Raid-de-Himalaya’.

Everyone thought I had lost it. With a spine that had been cut open thrice and a bladder and bowel condition, how was I going to manage a long, strenuous, high altitude journey, in minus temperatures? The only person who stood by me was my husband. He let me follow my dream, and told me that I would have to get there on my own effort.

I started my homework. Being an army wife, my first try was with the army adventure cell. But I soon learnt that only serving army officers’ wives were allowed to participate. I kept struggling for three years until I landed at the flag off of the Desert Storm Rally in Delhi in February 2009.

I literally sat there trying to pick up contacts and telling various teams about my wish of doing a rally. Some thought I was crazy, some felt happy about my courage but it was the Pune Millennium Team that took me seriously and taught me all the skills of navigation. Through them, I learnt what were the legalities required to be on a rally and that was going to be a challenge.

I got in touch with Himalayan Motorsports Association (H.M.A.) and Federation of Motor Sports Clubs of India (F.M.S.C.I.) regarding my acceptance in the rally as a formal competitor. They needed a bit of time, as it was the first time a disabled person had approached them. But I was happy that they appreciated my love and enthusiasm for motor sports and felt positive. I just held my breath back till I saw a ray of hope when they agreed but I had to complete all the required paperwork.

The most difficult task was to get the personal accident insurance on heavy risk basis. Next up was to start looking for sponsorship and a professional to accompany me and form a team. I am extremely grateful to Maruti Suzuki and three time Raid-de-Himalaya winner, Rakesh Diwan for supporting my endeavour. My husband, too, joined me as an attendant.

After a long struggle for permissions, sponsorships, a rally vehicle, a professional team partner and procurement of snow clothing, I found myself in Shimla. Initially people thought I was there to cheer a friend but the moment I got my name stickers on the car and a competitor’s license and an identity card on my neck, everyone took me seriously. I was very happy to see the surprised look on everyone’s face! It was a moment of achievement, a sense of satisfaction to be able to turn a dream into a reality and to prove to the world that disability is a state of mind and not of the body.

We were flagged off on the morning of October 7. It was a harsh 8 day, 1700 k.m. drive in minus degree temperatures. Even on an altitude of 18000 feet with oxygen shortage, I was able to sustain it all. It was tiring but the adrenaline rush was so high that I never felt tired. During the rally, we were in third position in the adventure category until an unfortunate accident happened.

The car ahead of us braked suddenly and our car skidded and hit the snowy road. The radiator developed a crack and the rest of the journey was completed filling up water every few k.m.s. That made our journey even more challenging and longer in terms of time. But on the whole, the experience was amazing. And I was awarded the TRUE GRIT TROPHY for outstanding courage.

More than the trophy, what made me happy was the declaration by H.M.A. official, Manjeev Bhalla that henceforth disabled persons will also be eligible to compete in the rally. I was thrilled that my efforts opened doors for people with disabilities to the world of motor sports.

Sometimes we take it for granted that a particular thing or activity is not meant for disabled people. Society then reinforces that belief. It happened to me as well when I decided to go for motor biking. But once I was determined, I did not only get a special bike designed but also made it on record time.

I feel that it is important for one to think beyond the stereotype and follow your heart.

Deaths in juvenile home natural: Delhi govt

Around 75 inmates died between 2004 and 2008 at the complex

New Delhi: The deaths of 12 inmates of a state-run juvenile home in one month were natural, the Delhi government said Wednesday in its reply to a National Human Rights Commission (NHRC) notice. According to investigating officials, poor maintenance or lack of basic amenities could be contributing factors.  According to investigating officials, poor maintenance or lack of basic amenities could be contributing factors.  The NHRC Tuesday issued a notice to Delhi Chief Secretary Rakesh Mehta asking for a detailed report into the cause of deaths of members of Asha Kiran Home and the state of affairs at the juvenile home, in north west Delhi’s Rohini area.  “The Delhi government has filed a reply to NHRC. Of the 12 inmates who died, one was under 18 years. Prima facie the cause of death appears to be natural. However, based on that we won’t close investigations. In previous reports, the home was found to lack basic requirement and had poor sanitation levels. We are going to see if the deaths had anything to do with that,” a senior official of the Delhi Commission for Protection of Child Rights (DCPCR) told IANS.

The NHRC was acting on a complaint filed by human rights activist Prabir Kumar Das who alleged that 12 mentally challenged inmates of the home had died in one month.  Media reports suggested that three of the 12 had died within 24 hours due to lack of basic facilities such as warm clothes. An earlier report by the child right’s panel in June last year had found that although sanctioned for 250 inmates, the only state-run complex for mentally challenged people in the national capital houses 750 mentally retarded men, women and children.  The children were found to be suffering from tuberculosis, seizures and skin diseases. The home lacked hygiene and proper sanitary conditions. Around 75 inmates died between 2004 and 2008 at the complex.  In many of these cases, the cause of death was epileptic seizures, which the DCPCR probe committee said could be owing to neglect of medical authorities.

The detailed report from the chief secretary sought by NHRC is due within four weeks time.

When the Mind Falters, Is Sex a Choice?

By Marie-Therese Connolly
Sunday, September 20, 2009

The 96-year-old woman with mild-to-moderate dementia pinned a piece of paper to her clothing each day to remind herself of the date. She posted scores of notes throughout the house to remember other details of life. “Cut toenails” and “take medication” read notes in her bathroom. And in the kitchen: “Cook the food [daughter-in-law] brought over.”  But the notes that detectives later found in her home contained other, more complex reminders: Thur jan 8 2:40 pm sitting on side of bed. Thinking of [the gardener] and how I love him and it is returned. Friend love.  And: think it is Tues, Jan 12 9:15 PM can’t think what has happened has happened. [The gardener] is unbelievable Is all a dream so much sex! sex! sex! Wonder what will happen next. Think he comes on Tuesdays. Help! . . .

For more than 20 years, the gardener had tended her yard. When he finished, she had often invited him in for a glass or two of wine. Each considered the other a friend. The woman’s son and daughter-in-law lived nearby and helped her with finances, meals and transportation; the daughter-in-law said the woman often talked of the gardener, who was in his mid 50s, as if he were a long-lost son.   But that changed Jan. 13 of this year when, according to a police report, she alleged that he had raped her.   Page Ulrey, the elder-abuse prosecutor in the King County prosecutor’s office in Seattle, wasn’t sure what she was looking at: Was it sexual assault, or consensual physical intimacy that hadn’t worked out as intended? Was the woman capable of making a decision about intimacy? Was she a victim? Had a crime been committed?  The tension between preserving freedom and assuring safety is not the exclusive domain of old age, nor is it limited to matters of sex. The challenges of the teenage years, when independence waxes, are well-known: Driving, drinking, sex and curfews are just a few of the battlegrounds. The balancing acts at the other end of life, when independence wanes, are not so dissimilar: driving, living independently and making decisions about care. But we are perhaps in greatest denial about issues that lie at the intersection of intimacy and dementia. Until a note on the wall, or a police report, or the surge in the number of people with dementia confronts us.

Already, 5.3 million Americans have Alzheimer’s disease or other types of dementia, and the number will rise as the nation’s population ages. At current rates, it’s projected that 7.7 million people will have dementia by 2030 and 11 million to 16 million by 2050. A 2007 New England Journal of Medicine study confirms that for most older people, sex remains an important part of life. And some organic brain changes of old age are characterized by increasingly sexualized behavior. The disability rights community has grappled with issues of consent and intimacy. But issues relating to sex in old age, whether consensual intimacy, or sexual assault, or the nettlesome netherworld in between, receive scant attention. They should receive more.  Earlier this year, two teenage girls, whose newspaper photos looked less like mug shots than like glam yearbook pictures, were charged with physical, sexual and emotional abuse of seven Alzheimer’s patients over four months at the Good Samaritan Society nursing home in Albert Lea, Minn., where they worked. Four other girls younger than 18 were charged with failing to report the conduct. The girls allegedly poked residents’ breasts, hit their genitalia, stuck gloved fingers in their noses and mouths until they screamed, spit into their mouths, rubbed men until they became erect and laughed about their exploits later at school or driving around town. According to the detective’s report, the girls saw their conduct as “something fun to do at work.” They believed they wouldn’t be caught, the detective wrote, because the “residents did not have their minds.”

Elder sexual assault, although largely hidden, takes many forms: the Florida grandmother raped by her drunk grandson; the Wisconsin minister who regularly came to the nursing home to have sex with his comatose wife; sexual predators in facilities among the most vulnerable people; elder sexual homicides; and more.  Contrast these horrors with the situation at the Hebrew Home for the Aged in Riverdale, N.Y., where nurses and aides have grown accustomed to walking in on residents in flagrante delicto and respectfully excusing themselves. The facility is one of the few in the country to accept and facilitate consensual physical intimacy among residents. “Intimacy and sexual expression are fundamental human and civil rights, which must be encouraged and protected,” says Daniel Reingold, the Hebrew Home’s president and chief executive. “Sexual consent begins as an affirmation of these rights . . . . Our society must uphold these last vestiges of adulthood, rights and life pleasures.”  Unlike most facilities, the Hebrew Home has rigorous procedures to determine consent. But there are challenges. For example, the resident who no longer recognizes her husband of 50-plus years but is physically intimate with a new (also demented) boyfriend in the facility. (Not all family members come to terms with new affections with the equanimity of former justice Sandra Day O’Connor.)

Between clear abuse and respectful deliberation lies the murkier terrain that Ulrey, the Seattle prosecutor, confronts. Previously, most prosecutors wouldn’t go near cases involving witnesses or victims with dementia. According to a recent National Institute on Aging-funded study of sexual abuse in care facilities, police agencies nationwide declined to arrest 32 individuals even though state authorities had evidence, including positive rape kits, victim disclosures and eye witnesses, that they had committed sexual assault.  But as a handful of prosecutors around the country, such as Ulrey, have shown a willingness to deal with these difficult issues, more cases have emerged that previously would never have come to light.  In another case on Ulrey’s docket, a nursing home aide found an 87-year-old woman with serious dementia in bed, underwear partially down, while her much younger gentleman caller hastily pulled up his pants and washed his hands. When interviewed, the woman said that she enjoyed having the man visit and called him her boyfriend. She said that the man told her she was beautiful and kissed her but that she would not have sex with him and denied any other sexual contact. The rape kit revealed evidence of intercourse.

While the nursing home staff might correctly have assessed that the woman’s gentleman caller took advantage of her, she might have viewed his visits differently. And she would not be the first person in the history of the world to have had an unrealistic perception of a suitor’s intentions. But how do we discern her state of mind? Did she want to have sex but was ashamed to admit it? Was she traumatized by non-consensual sex but reluctant to acknowledge that she had been abused? What duty did the man have to determine her capacity to provide consent, especially if she appeared to willingly engage in sex? Should dementia confer an absolute prohibition? And what is a facility’s obligation to protect her from harm? (In this case, the facility banned the man from visiting. Is this what she would want?)   Often, the more you know, the harder these issues get. This was so in the case involving the woman and her gardener.  The police report said that the alleged rape had occurred Jan. 13, 2009. On Jan. 14, the woman told her daughter-in-law that the gardener had “taken liberties” with her the previous day; on the evening of Jan. 15, she said he had raped her. On Jan. 16, she told authorities that he had thrown her on the floor of her house and raped her and that she had fought for her life. She forgot who the detective was three times during a 15-minute interview.  In addition to the notes detectives found in the woman’s house discussing how much she liked her gardener, a note directly addressing the incident states:

Wed 1/14 it’s 11:30 — I called and it is Wed. am upset about [the gardener]. I want the regime to go back the way it was. Don’t know should I call him or not think about it and call some time today. 2:15 sitting by phone I am so full of remorse I couldn’t sleep. I want things to go back to it the was every was in the beginning. You just came in for a glass of wine after cleaning up the yard mowing etc. Things got way out of hand & I feel terrible.  A medical examination revealed evidence of sexual activity but otherwise no bruising or sign of physical struggle. Her home also showed no sign of a fight.  The gardener told detectives that the woman had been telling him for weeks that she was attracted to him and desired to be with a man. He alleged that on Jan. 13 they held hands, talked, drank some wine; that she said she wanted to have sex with him; that they tried to have intercourse but were not able to, “engaged in some touching” and “fumbled around a bit.” The physical contact he described in detail to detectives appears consistent with her physical condition. He said that he considered her a close friend and a healthy person with short-term memory problems but that “a lot of times she remembers things she thinks she’ll forget.” He said that he had exhibited poor judgment but that he hadn’t pressured her. The gardener had no previous criminal record. But a polygraph test he took about the event indicated “deception,” Ulrey said.

For the woman, the events of Jan. 13 crystallized solidly into the memory of a rape. In the wake of the incident, she no longer lived independently, and her health deteriorated quickly. “Everyone who hears about this case is shocked,” Ulrey said. “But the question we had to confront was: Did we think a crime had occurred? And if so, did we have the evidence to prove it?”  Ulrey agonized about how to proceed. After a number of hard conversations with colleagues, her office declined the case. “We asked ourselves whether our reaction would have been different if the alleged perpetrator had been a 90-year-old friend. And we realized that by prosecuting this case, we would in effect have to take the position that the woman was incapable of providing consent.”  Ulrey went in person to tell the woman’s family that her office would not press charges. “It was totally heart wrenching,” she said. “They were devastated. The woman had lost so much.”

To what extent can someone with dementia consent to sex? The answer is: It depends. Not all dementias and decisions are equal. In different stages of the disease, dementia might incapacitate certain types of decision-making but not others. So, for example, a person might no longer have the capacity to handle financial affairs but might retain the capacity to make decisions about with whom to engage in physical contact.  My fully lucid, opera-loving, physician, single-mother-of-four aunt who drove a red sports car into her 70s, referred to the vicissitudes of aging and intimacy this way: “When I turned 50, I had a young lover. When I turned 60, I got a fast car.” She died of sudden heart failure in her 70s skiing a black diamond slope.  No one wants to take away car keys, skis or the right to make decisions about sex. But when people live longer and capacity declines, more and more of us will be called on to face these difficult and often heartbreaking decisions. The broader challenge is to increase our awareness and understanding of elder abuse and to better protect elders while honoring their wishes for intimacy and dignity. But it’s slow going: The only comprehensive federal bill ever to address elder abuse, the Elder Justice Act, has languished since 2002.

For now, we mainly ignore these issues. Our response to sex in old age echoes the archetypal reaction that kids have to parents — or worse, grandparents — having sex: revulsion and denial. The result is that we are ill-equipped to prevent sexual abuse, allow for intimacy or distinguish between the two.

Washington Post

A whisper in your ear

By Geoff Adams-Spink
Age & disability correspondent, BBC News website

An erotic audio site is marketing itself to blind and visually-impaired people. But have disabled people been excluded from the world of “adult” entertainment? Lud Romano – who runs an internet communications business – was on holiday in South Africa with his partner when they discovered erotic audiobooks on iTunes. They found the idea of a single voice reading aloud to be a little “empty”

It is the erotic that helps us to feel alive, real, included, and disabled people have so much to offer the world of the erotic and the adult. Mat Fraser Actor

“If you’re going to get an erotic charge from that, you have to do a lot of work yourself,” he says. He decided there and then to commission a series of short radio dramas which would be made available from a website.  The original target audience for Clickforeplay was sexually confident, upwardly-mobile young women – the sort of people who felt comfortable about buying erotic fiction from a High Street bookshop or browsing the more female-friendly “adult” shops.  The 12-minute chunks of audio sold, but not in vast numbers.  ”They [the plays] weren’t costing anything, neither were they earning anything,” said Mr Romano.  After a failed attempt at the “soft porn” market – “people wanted it a lot harder than we could ever achieve in the audio domain” – he looked at what was available for blind and partially-sighted people.

Erotic audiobooks

He was surprised to discover how under-served the market was in terms of adult material.  This is not to suggest that there is nothing “out there” for people who do not have access to standard print or video  For instance, the Royal National Institute for Blind People (RNIB) has erotic fiction in its audiobook library, as any mainstream library might have.  Many people view mainstream pornography as exploitative  And general audiobook companies have sections dedicated to erotica which can run to 200 or so titles.   But one of the few dedicated erotic offerings for blind people that Mr Romano could find was a website containing an archive of audio recordings of American volunteers describing what they could see while watching hardcore pornography clips.  A brief listen to a couple of the audio files at the site is probably enough to convince most people to entertain themselves with something a little more improving. Deadpan, monotone descriptions of mainstream porn might even seem to the casual surfer like some sort of prank.  ”It’s just so bad, it’s ridiculous,” Mr Romano says.  His approach has been to get beyond what he describes as the “bored housewife meets young pool cleaner” type plot and to aim for something that will appeal to more sophisticated tastes.

He has a group of three writers who are simply told to “write naughty stories”.  The plays are then recorded in a suite of rooms in north London “as live”.  There are erotic audio sites but few are marketed at blind people.  ”It’s not actors gathered around a microphone – they really act this, dynamically.”   For those who worry about the exploitative nature of pornography, it might be reassuring to know that Mr Romano’s actors do, of course, keep their clothes on.  Each drama has a setting that is “ripe for erotic development”, according to Mr Romano.  One concerns the interaction between an artist, his female assistant and a nude female model.  Another is set in a laboratory in which two male scientists accidently discover a powerful aphrodisiac which their female boss insists upon trying. Unfortunately, she uses all of it before they can analyse it and produce another batch.  Each drama costs around £2,500 to produce.  Mr Romano’s firm has signed a deal with a company which gives text-to-speech output from webpages and magnifies the text as well.

Society’s reluctance

And while some people may disapprove of the enterprise as just another example of the internet being used to disseminate sexual content, it will be welcomed by those disability rights activists who believe the exclusion of disabled people from the sexual arena mirrors their marginalisation in other areas of life. Writer and performer, Mat Fraser, says that making adult material available to disabled people is an intrinsic part of inclusion.  ”It is the erotic that helps us to feel alive, real, included, and disabled people have so much to offer the world of the erotic and the adult,” he said.  Society’s reluctance to accept disabled people’s sexuality is perhaps based on a deep-rooted but unspoken belief that they should not reproduce.  Many disabled people feel excluded from the world of ‘adult’ entertainment This is a prejudice that is being challenged by activists, artists and writers, like Penny Pepper – a writer of erotic fiction that includes disabled characters. “We are tired of being nannied and denied the rights to sexual expression that non-disabled people take for granted – so on that level, at least, we should fight for equal access to view and enjoy such material,” she says.

Certainly, the RNIB makes sure that a wide range of tastes is catered for when choosing material for its Talking Book library.  The library’s manager, Pat Beach, says the main problem is access to printed material per se – less than 5% of books published in the UK ever appear in large print, audio or Braille.  ”We do not act as a censor – erotic fiction can be found on our shelves just as it is in a public library or a bookshop,” he says.  Others believe that – because disabled people can experience difficulty in forming intimate relationships – accessing erotica and adult entertainment can provide an alternative outlet.  ”As part of the wider campaign for barrier removal, it is really important also to remove barriers to erotica and sexual expression for disabled people,” says disabled academic, Tom Shakespeare.  Mr Romano has already begun discussions with the RNIB, hoping to find an avenue to make more blind people aware of his product.