What does the Mental Health Care Bill means For Persons With Mental Illness?

mentalhealth-bill1

Featured Image Credit: A demonstration outside the Health Ministry on World Mental Health Day in October 2012. Photo: V. Sudershan | The Hindu

The Mental Health Care Bill 2013 was passed in the Rajya Sabha on 8th August 2016. Since I have not seen the complete Bill with the 134 official amendments as yet I am not going to analyse the Bill per se in this article. This piece is more of an overview with some critique thrown in for people who are not directly involved with mental health sector. Also let me clarify at first place that comments made in this article are personal and do not reflect the views of organisation/network I am attached with. This Bill created lot of controversy within the sector as there seemed to be a never-ending tussle between persons with mental illness, the caregivers and the professionals who offer medical services. Sometimes the debates became too nasty to digest during discussion of the bill. At certain point of times I felt that care-givers are eternal enemies of persons with mental illness and vice-versa.

This whole debate made my life quite difficult –  as many friends in this sector know that I started working as a professional, became a person with mental illness and now I’m also a primary care-giver. Since I have gone through all the roles in my life, it was difficult for me to understand why we were quarreling so much – let’s be clear, the more fragmented we are within our movements, we give leeway to the government to divide us further.  It became mandatory for Indian Government to amend or rewrite few laws after we ratified United Nations Convention on Rights of Persons with Disabilities (UNCRPD); Mental Health Act of 1987 was one of them. The 1987 Act was archaic in nature which replaced the 1992 Indian Lunacy Act. Though there had been some changes like the terminologies where Lunatic Person was changed to Mentally Ill Person, the critics feels that changes had been cosmetic and situation of persons with mental illness remained as pathetic as before.

Now will the new Mental Health Care Bill bring in many changes? It is difficult to believe so; in general mental health care is a low priority for the government. Not only there’s severe scarcity of trained persons to deal with the need of the sector, the stigma attached to mental health remains abundant in our society. So much so that people like us, when we talk about our own illness, find deafening silence from general society and social campaigns like #ImNotAshamed are required to publicize that we are not ashamed to talk about ourselves. As a caregiver, I find it difficult that close friends or relatives, who call up and enquire about physical health if one of my family member has fever or any other ailment, turn off totally if I want to share with them the mental health issue of the same family member. One does not have someone to turn to share the issues surrounding care-giving entails.  There are definitely some good features in the proposed new law. The decriminalization of suicide is a positive step and there’s option for advanced directives where patients can choose what kind of treatment they want. However, in a country like India, where literacy rates are still not satisfactory, how will common people be aware of different kinds of treatments available to them, so that they can choose from the same remains a mystery to me. Like every other sphere, people coming from different marginalised groups will have less access to this information.

There are also chances that the state will utilise this clause of the Law by not giving treatment to a person with mental illness saying they opted for it – and getting treatment from state should actually be a basic right.  The most important issue that I find we are missing is that in our country we do not have specific law on Right to Health. Though this was proposed a few years ago and was put up in the Ministry’s website, the idea was completely forsaken for reasons unknown. Personally, I feel we would not have required separate Mental Health Legislation if we could include this in our Right to Health Law – mental health is essentially part of larger Right to Health. When we segregate mental health from general health, the stigma increases.

We also have Persons with Disabilities Act of 1995 which we hope will soon be replaced by Rights of Persons with Disabilities Act. For natural reasons mental illness is a component of both of them. Now, if Disability part of persons with Mental Illness could be addressed through this law and Health part through the Right to Health Act, it would have been an ideal situation. But we do not have much hope to achieve this ideal situation as “Divide & Rule” policy seems to please everyone.

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30 Years Later, Parliament Passes New Mental Health Bill: A Step That Falls Short

MANISHA SHASTRI
Monday, August 08,2016

The Mental Health Care Bill, which was first introduced in the Rajya Sabha in August 2013, was finally debated and passed by the Upper House of Parliament yesterday.   The Bill repeals the Mental Health Act, 1987 and consists of 134 amendments, which many MPs in the Rajya Sabha hailed as historic, while also warning the Speaker that he must not rush through it given the importance of this amendment.

The first legislation addressing issues of Mental Health/ Illness in India was during the colonial era known as the Indian Lunacy Act, 1912; later it was amended and enforced in the form of the Mental Health Act, 1987. The focus of the Indian Lunacy Act and the Mental Health Act were primarily on treatment, regarding admission and discharge of diagnosed individuals and regulations for psychiatric institution among several others; however, both these legislations hugely lacked in making any provisions against the discrimination and upholding of the rights of persons with mental illness.

Mental Health/ Illness in India has always lacked awareness, understanding and nuanced perspective and the discourse on it has mostly been driven by Psychiatrists and other medical practitioners. Persons diagnosed with mental illness have a history of being discriminated, marginalised, and excluded and being denied basic fundamental rights. The Mental Health Care Bill was introduced in the light of the provisions made under the United Nations Convention on the Rights of Persons with Disability (UNCRPD), which was ratified by India in 2007. The Bill is an attempt towards aligning with the UNCRPD and addressing mental health issues from a right based perspective; while some amendments such as the decriminalisation of suicide are progressive, the Bill fails to holistically address the issues of Mental Health/ Illness.

Some of the salient features of the Bill are:

  • The primary objective of the Bill is to ensure the right of every individual without discrimination to access affordable and good quality mental health services; which as per the provisions are to be made available by the Government in sufficient quantity and easily accessible geographically. It also states that persons with mental illness have the right to equality of treatment, protection from inhuman and degrading treatment, free legal services, access to their medical records, and complain regarding deficiencies in provision of mental health care.
  • The new Bill defines mental illness as ‘a substantial disorder of thinking, mood, perception, orientation or memory that grossly impairs judgment, behaviour, capacity to recognise reality or ability to meet the ordinary demands of life, mental conditions associated with the abuse of alcohol and drugs, but does not include mental retardation which is a condition of arrested or incomplete development of mind of a person, specially characterised by subnormality of intelligence’
  • It decriminalises suicide and allows for Electroconvulsive Therapy (ECT) only with muscle relaxants and anaesthesia, prohibiting the use of ECT on minors
    Makes provisions for ensuring ‘informed consent’ and for treatment procedures which maybe least restrictive in nature.
  • The Bill also makes provisions with regard to individual capacity, it states that every individual shall be deemed to have the capacity to make decision unless it is proved that the individual is (i) unable to understand and (ii) unable to appreciate the foreseeable consequences of his decision
  • The Bill makes provisions for the setting up of a Mental Health Review Commission; Central and State Mental Health authority and establishment of more treatment centres/ hospitals for mental illness.
  • The Bill provides that each individual has the right to make an Advanced Directive specifying whether or not they want to be treat for a mental illness; the nature of treatment and who the care – giver might be. However, if the doctor or care – giver do not wish to follow the directive they can apply to the Mental Health Review Board.
  • While certain provisions of the Bill are progressive in nature; the Bill in its entirety is not as progressive and does not reflect a nuanced understanding of mental illness. From the definition of mental illness to the various provisions in it, it is evident that the Bill does not take into account factors such as poverty, the immediate environment of the individuals and other socio – cultural factors which affect an individual’s mental health. Kanimozhi (DMK) and Viplove Thakur (INC) in their respective speeches emphasised on the need to look at and address environmental factors affecting mental health instead of only focusing on treatment; Husain Dalwai (INC) also pointed out that the Bill focuses only on illness and does not make provisions for prevention.

The Bill lays great emphasis on setting up several commission and boards for monitoring and regulation of Mental Health Care facilities; however, it fails to address issues of creating awareness, lack of human resource, absence of data regarding how many individuals in India suffer from mental illness, social integration of persons with mental illness and support systems for care – givers and family members. Madhusudan Mistry (INC), in a passionate speech raised several relevant issues pointing out that the Bill fails to lay down any provisions for creating awareness and addressing the stigma associated with mental illness. He also spoke of the need to entirely prohibit the use of ECT – a view held by several civil society/ user/ survivor groups; pointing out that internationally too there is a movement opposing ECT as a method of treatment. He also pointed out that the Bill is ‘individualistic in nature’ and does not make sufficient provisions for family members and care – givers who also face a lot of challenges – a view echoed by Rajeev Gowda (INC) in his speech demanding that counselling support also be provided to family members and caregivers.

Several other parliamentarians such as A. K. Selvaraj (AIDMK), Madhusudan Mistry (INC) and Vikas Mahante (BJP) also raised the need for a thorough survey and data base of the number of persons with mental illness.  While several speeches made in parliament yesterday were backed by facts and ground realities, several points raised reflected the lack of understanding regarding mental health. Towards the end of the debate, while the voting was being carried out the Deputy Chairman of the House P. J. Kurien referred to persons with mental illness as ‘mentally challenged’; several other parliamentarians in their speeches too seemed to confuse mental retardation with mental illness – which reflects the poor understanding of the very basic difference between mental illness and intellectual disabilities.

From several studies conducted in the country it has been found that 9 out 10 cases of mental illness go untreated – in the light of these appalling statistics the Bill does little to address mental illness and mental health keeping by taking into consideration the various socio – economic, political and cultural factors. It is also worth noting the poor turnout in the Rajya Sabha for the debate.   While the Bill is a welcome move towards the inclusion and better treatment of persons with mental illness, there is a lot more which need to be addressed and taken into account to ensure that the rights of persons with mental illness are protected.

(The writer holds a M.A. in Social Work in Disability Studies and Action; She is a Social Activist (Disability, Mental Health, Gender and Sexuality, Women and Child Rights); Poet and Writer.)

The Citizen is you

Dyslexic HSC student takes exam with adult writer’s help

Kranti Vibhute

Writers choice | Abdul’s mother recounts the tale of how difficult it was to find one after a younger writer dropped out at the last minute

It was a tiring day for Rehana Khan (name changed), mother of a learning disabled student of Higher Secondary Certificate (HSC), science stream, on Thursday.  She had to run from pillar to post to find a younger writer but finally managed to get an adult writer for her son Abdul (name changed). Her son was appearing for his first board examination paper.  Rehana started her hunt for a younger writer from December and found one from one of the coaching institutes where her son used to go. But suddenly the grade XI student, who promised to be the writer for Abdul, stopped taking her call, Khan said.

Then came a government notification that specified conditions on appointing adult writers. However, guidelines on how to avail adult writers came only this Monday.  Rehana found an adult writer with great difficulty. She had to submit not just the application for an adult writer but also the picture and government-approved identity of the adult writer.  Rehana said: “My son is dyslexic and also have Attention Deficit Hyperactivity Disorder (ADHD). He was relieved when he got the concession to get an adult writer. He remember the difficulty he faced during his Secondary School Certificate (SSC) board examination. His writer, who was known to him, promised to be his writer during SSC exam and also took holiday for Abdul’s exam. But he came for the first two papers and then vanished. My son had to finally write the exams without a writer.

“This time also, the younger writer of grade XI stopped taking my calls because his exams were also going to start the same time. I even went to that writer’s college to request the principal to take his exam later. But the principal refused to do that. Hence, I had to search for an adult writer. The adult writer was encouraging my son to finish the dictation of answers fast in order to finish the exam on time. He was made to sit separately under strict supervision. My son was happy when he came out of the exam centre. Though the paper was lengthy, it was good, he claimed. Adult writers give confidence to children with special needs. Adult writers will also be of great help to autistic and spastic children.”

But Rehana still has some work left. In between, she was was suddenly asked to submit the qualification details of the adult writer to the Mumbai divisional board. She will be doing that on Friday.

DNA

Disability, Language, & Divyang

Kafila.org

by

In 2009, as a writer for a disability news portal I got a note back with one of my stories from the director of the organisation. “Suffering from disability”, I had written about someone. The note said “I have been a wheelchair user since the age of 15, and trust me I am not suffering.” Over the years, the first document I shared with new employees of the disability rights organisation I worked for in Delhi was a document on ‘disability etiquette’ that outlined not just terminologies but also the acceptable ways of interacting with people with disabilities. Yes, even in the 21st century we need to coach people on ‘interacting’ with a section of humanity. The discourse on importance of language has taken a new meaning when recently Prime Minister Narendra Modi called people with disabilities ‘divyang’ or people with divine abilities. The reaction to this has been outrage, to shaking of heads, to complete indifference. But it is important to talk about language when it comes to disability because it reeks of charity and reflects the patronizing attitude that prevents people with disabilities in India from getting their due.

Let us be very clear, disability is part of human diversity. Disability is as normal or abnormal as being a man, woman, gay, lesbian, person of colour, or any other variation of being human for that matter. Why then do we look at disability as something that needs to be ‘overcome’? With the proliferation of social media, we are now faced with innumerable ‘inspiration porn’ posts. Yes, inspiration porn. As described by Stella Young, Australian journalist, comedian, and activist – inspiration porn is objectifying people with disabilities for the benefit of non-disabled people. Young said the purpose of these images is to inspire people, to motivate them, so that they can look at them and think “Well, however bad my life is, it could be worse. I could be that person.” Precisely for that reason, people living with a disability are tired (and angry) of all the euphemistic terminologies used about them. No, they are not specially-abled, or differently abled, or ‘divyang’ for that matter. They are persons with disabilities and disability is a crucial part of their identity, just like one’s gender, race, or nationality.

The understanding of disability has evolved over time and continues to do so. Historically, disability was looked at as a charity or a medical issue. As social and political organization of people with disabilities started in the 60s and 70s, the idea of disability rights began to gain ground. By 1981, the fact that disability is a social and human rights issue – the year designated by the United Nations as International Year of Disabled Persons.

The next milestone in the understanding of disability was in 2006 with the adoption of the UN Convention on the Rights of Persons with Disabilities (CRPD). This Convention is the fastest negotiated human rights treaty in the history of the UN. So far, 161 countries have ratified CRPD. India ratified CRPD in October 2007 and was the seventh country in the world to do so. CRPD has changed the paradigm in which we look at disability. It is no longer a ‘problem’ with the individual, but is a result of the interaction of individual impairments with barriers in the environment – be it physical, informational, or attitudinal. For instance, if the access to a building only has steps and no ramps, that would lead to a disability for a person with limited mobility – not the fact that he/she has a physical impairment. As Young had famously said in her TED talk about a meme with the caption ‘The only disability is a bad attitude’: “No amount of smiling at a flight of stairs has ever made it turn into a ramp.”

According to Census 2011, India is home to 26.8 million people with disabilities. Conservative estimates however put it close to 70-100 million. In fact, the 11th Five Year Plan acknowledges that disability is grossly underestimated in the country. The World Health Organisation says hat 15 percent of a country’s population is affected by disability. An analysis of government spending from 2008-12 done by the National Centre for Promotion of Employment for Disabled People (NCPEDP) showed that India spent an abysmal 0.0009 percent of its GDP on disability issues. Another annual survey conducted by NCPEDP showed that in 2014, only 0.56 percent students with disabilities were in higher educational institutes despite the 3 percent reservation. Given this poor access to education, it is not surprising that less than 1 percent of people with disabilities in the country are meaningfully employed. What people with disabilities need is equal access to opportunities that enable them to be educated, employed, and live a full and complete life as any other citizen in the country. What they do not need is any more of clever nomenclature that puts them in a ‘special’ box reinforcing stereotypes of pity.

Dorodi Sharma holds a master in public policy from University of Maryland College Park. A disability rights advocate, she is Advisor to Chairperson, Disabled People’s International and was previously Programme Manager at National Centre for Promotion of Employment for Disabled People, India.

Kafila

The Strange Case of Anna Stubblefield, New York Times

She told the family of a severely disabled man that she could help him to communicate
with the outside world. The relationship that followed would lead to a criminal trial.

By DANIEL ENGBEROCT. 20, 2015

Anna didn’t want to keep her feelings secret. As far as she knew, neither did D.J. In recent weeks, their relationship had changed, and it wasn’t clear when or how to share the news. ‘‘It’s your call,’’ she said to him in the lead-up to a meeting with his mother and older brother. ‘‘It’s your family. It’s up to you.’’

When she arrived at the house on Memorial Day in 2011, Anna didn’t know what D.J. planned to do. His brother, Wesley, was working in the garden, so she went straight inside to speak with D.J. and his mother, P. They chatted for a while at the dining table about D.J.’s plans for school and for getting his own apartment. Then there was a lull in the conversation after Wesley came back in, and Anna took hold of D.J.’s hand. ‘‘We have something to tell you,’’ they announced at last. ‘‘We’re in love.’’

‘‘What do you mean, in love?’’ P. asked, the colour draining from her face.

To Wesley, she looked pale and weak, like ‘‘Caesar when he found out that Brutus betrayed him.’’ He felt sick to his stomach. What made them so uncomfortable was not that Anna was 41 and D.J. was 30, or that Anna is white and D.J. is black, or even that Anna was married with two children while D.J. had never dated anyone. What made them so upset — what led to all the arguing that followed, and the criminal trial and million-­dollar civil suit — was the fact that Anna can speak and D.J. can’t; that she was a tenured professor of ethics at Rutgers University in Newark and D.J. has been declared by the state to have the mental capacity of a toddler.

Anna does not agree with this assessment. She does not deny (as no one could) that D.J. is impaired: His cerebral palsy leaves him prone to muscle spasms in his face, his neck, his torso and his arms and hands. She acknowledges that it’s hard for him to stay in one position, that muscle contractions sometimes twist his spine and clench his fingers in a useless ball. It’s clear to her, as it is to everyone, that he has trouble making eye contact and keeping objects fixed in view. She knows that he wears diapers and cannot dress himself; that he can walk only if someone steadies him; and that otherwise he gets around by scooting on the floor. She knows that D.J. screams when he’s unhappy and chirps when he’s excited, but that he can’t control his vocal cords. Anna understands that even now, at 35, D.J. has never said a word.

But she takes issue with the other half of D.J.’s diagnosis: that he’s not just spastic but has a very low I.Q. In 2004, five years before Anna met him, a clinical psychologist named Wayne Tillman, who consults for New Jersey’s Bureau of Guardianship Services, assessed D.J. and found that his impairments precluded any formal testing of intelligence, but that certain facts could be inferred: ‘‘His comprehension seemed to be quite limited,’’ ‘‘his attention span was very short’’ and he ‘‘lacks the cognitive capacity to understand and participate in decisions.’’ D.J. could not even carry out basic, preschool-­level tasks. A few months later, a court made P. and Wesley his legal guardians.

From the time she met D.J., Anna thought Tillman had it wrong. D.J. might be unable to speak or hold a pencil, but those are motor skills, not mental ones, and their absence didn’t mean his mind was blank. What if D.J. had a private chamber in his head, a place where grown-up thoughts were trapped behind his palsy? Then, of course, he would fail the standard tests of his I.Q. — tests made for people who can answer questions verbally or read and write. What D.J. needed was another way to share his deep intelligence.

At the request of D.J.’s family, Anna began to work with him, using a controversial method known as ‘‘facilitated communication.’’ Starting with her hand beneath his elbow, she helped him point at pictures, and then at letters, and eventually at the buttons of a Neo, a hand-held keyboard with a built-in screen. With his hand in hers, she helped him type out words after 30 years of silence.

Wesley and his mother had been thrilled with D.J.’s progress, but now, suddenly, they recoiled. (Neither D.J.’s family nor Anna agreed to be interviewed for this article; all their quotes and recollections are drawn from court records and testimony. P. and Wesley are referred to by a middle initial and a middle name to shield D.J.’s identity, which has not been publicly revealed.) When Wesley told Anna he thought she had taken advantage of his brother, she could not muster a response. At last, with her help, D.J. began typing: ‘‘No one’s been taken advantage of. I’ve been trying to seduce Anna for years, and she resisted valiantly.’’ Then he typed another message, meant for Anna: ‘‘Kiss me.’’ Wesley walked out.

Later, after he told Anna that she wasn’t to see his brother anymore, she tried to plead her case by phone: ‘‘I will put in writing, prick my finger and sign with blood — whatever makes you reassured that this is for real,’’ she promised in a voice mail message. ‘‘I will leave my husband, and I will make a permanent life and home with [D.J.].’’

But the family had had enough. What at first struck them as a miracle — a voice for D.J., his inner self revealed — now seemed a fraud. D.J. could not have given his consent to any love affair, they later told the authorities, because he suffers from profound mental disabilities, just as the psychologists had always told them. His ‘‘messages’’ must have been a sham. If Anna pretended otherwise, it was only so she could use D.J. as a guinea pig for research, or to further her career, or because, as Wesley would later say during the three-week trial for sexual assault that concluded this month in Newark, ‘‘she was having some sick, twisted fantasy.’’

Anna has never wavered in her claim that she and D.J. fell in love and that his messages were his. Even after she was indicted, she seemed more concerned about his fate than her own. ‘‘In the spring of 2011, [D.J.’s] access to his means of communication was taken from him,’’ she wrote in a chapter for a recent academic book, which was published while the justice system creaked its way toward trial, ‘‘and he is once again treated as severely intellectually impaired by those who have control over his life. This chapter is dedicated to him, in hope that he will one day regain his voice and his freedom.’’

Marjorie Anna Stubblefield goes by her middle name, pronounced with an aristocratic a, as in the word ‘‘nirvana.’’ Her last name is her former husband’s. Years ago, she was Margie McClennen, an honours student who grew up Jewish in the nearly all-white town of Plymouth, Mich. ‘‘I was raised to believe that I have the responsibility of tikkun olam, repairing the world,’’ Anna wrote in her 2005 book ‘‘Ethics Along the Colour Line.’’ As a high-school student, she put that lesson into practice, writing articles for the school newspaper — one about a classmate who became pregnant, and another about a press-­freedom case involving Plymouth students. Each won a national award. While a sophomore, Anna played the title role in a town production of ‘‘The Diary of Anne Frank.’’ ‘‘Marjorie just was Anne Frank,’’ says Elyse Mirto, a fellow cast member who is now an actor. ‘‘You know that famous quote — ‘I still believe, in spite of everything, that people are truly good at heart’? That was Marjorie.’’

Her parents were involved in local politics, environmentalism and women’s rights, but their most enduring cause was that of people with disabilities. Each trained in special education for their Ph.D.s. Her mother, Sandra McClennen, started working with blind, cognitively impaired children in 1963. For decades, she taught disabled people social skills, like shaking hands and talking appropriately with strangers, in the hope of helping them move out of state-run hospitals and into community housing.

Anna shared this interest in disabilities: As a high-school student, she studied Braille and learned the alphabet in sign language. But as a junior academic, she would apply the mandate of tikkun olam to a different focus — the fight for racial justice. Since getting her Ph.D. in 2000, she has become a prominent scholar in the field of Africana philosophy, has published widely on race and ethics and has served as the chairwoman of the American Philosophical Association’s Committee on the Status of Black Philosophers — the first and only white scholar ever to have done so. ‘‘Our world is in shambles,’’ she wrote in ‘‘Ethics Along the Colour Line.’’ ‘‘White supremacy is central to this state of affairs, and we cannot repair the world without ending it.’’

Her own family is mixed-­race — she has two children with her ex-­husband, Roger Stubblefield, a black tuba player and classical composer. For 11 years, she served on the faculty at the Newark campus of Rutgers University, whose student body is among the nation’s most diverse. Yet for all her work on behalf of African-­Americans, she worried that she might be ambushed by the ‘‘habits of racism.’’ ‘‘Even in well-­intentioned quests to be antiracist,’’ she wrote, ‘‘white people all too often invade or destroy the space of non-white people.’’ The same essay lays out what could be a thesis statement for her whole career: It is crucial, she wrote, for white philosophers ‘‘to wrestle with the horrors and conundrums of whiteness.’’

Those ‘‘horrors and conundrums,’’ as Anna saw them, formed the nexus of oppression she had sworn to fight in all its forms. As the years went by, her mission seemed to broaden and merge into her mother’s. By 2007, Anna had begun to argue that a person’s intellect — and the degree to which he or she is ‘‘disabled’’ — could be as much a social construct, as much a venue for tyranny, as race, gender or sexuality. It was, after all, white elites, she wrote, who first devised measures of I.Q. ‘‘as both a rationalization and a tool of anti-black oppression.’’

With this shift in her scholarship, Anna began to wrestle not just with race but with disability; not just with racism but with ableism. If poor, black Americans were the most vulnerable members of society, she wrote in 2009, then poor, black, disabled Americans — men like D.J., born with cerebral palsy, raised by a single mother, seemingly unable to communicate — were the most vulnerable of the vulnerable. Voiceless in both fact and metaphor, she said, they were the ones ‘‘whom we push so far to the margins of our society that most of us, regardless of race, do not even notice when they fall off the edge.’’

By the time that warning made it into print, Anna had been working with D.J. for about a year. This was her mitzvah and her tikkun olam. She was helping to repair the world.

When D.J.’s brother finished his dissertation, he included a dedication to his family: ‘‘Mom, I stand in awe of your strength and grace,’’ he wrote. Wesley also put in a message to his little brother: ‘‘[D.J.], you never cease to amaze me.’’

Wesley graduated from high school in 1993, then enrolled at Rutgers. He was always very close to his brother, whom he sometimes calls ‘‘Baby Bubba.’’ By the time Wesley was named one of D.J.’s legal guardians, he had earned a master’s degree in history; in 2009, he was on track to get his Ph.D. and in one of Anna’s courses. During class, Anna showed part of a 2004 Oscar-­nominated documentary called ‘‘Autism Is a World,’’ narrated by Julianna Margulies and co-­produced by CNN. The film described a nonverbal girl with disabilities and an I.Q. of just 29 who went to college after learning to type using facilitated communication, or F.C. The girl reminded Wesley of D.J., and after class he went to Anna for advice: Could his brother also learn to use a keyboard? Anna said she had attended a three-day workshop on the technique the year before and maybe she could help.

One Saturday not long after, Wesley and P. took D.J. up to Anna’s office in Conklin Hall. In preparation for their visit, Anna had cut out pictures from magazines and drawn on index cards. ‘‘In which room would you find a stove?’’ she asked, laying out four cards showing a kitchen, a bedroom, a bathroom and a laundry room. ‘‘Please don’t be insulted,’’ she added quickly. ‘‘I assume you know the answers to these questions.’’

D.J. couldn’t name the pictures or gesture at them on his own. It seemed to Anna that he would try to point and then freeze up and lock his hands together. So she used the method that she learned during the workshop. First, she placed her hand beneath his elbow to stabilize his arm and found that, with this help, he could pick out the picture of the kitchen. Then she asked him to show her the president of the United States, and D.J. pointed — still with her support — to a photo of Barack Obama. Now she used her other hand to tuck his pinkie, ring and middle fingers lightly under hers, as if their hands were spooning, with just his index finger sticking out. From this position, she introduced a set of letter cards and finally a keyboard. ‘‘It was clear he knew the alphabet and could spell simple words,’’ she said later. ‘‘He was a fast learner.’’

P. took D.J. to Rutgers every other Saturday and then asked Anna over to her house for more facilitation. ‘‘I would get excited: ‘Did he do something?’ ’’ P. said. ‘‘I tried to contain myself, but [Anna] said I was distracting him.’’ At one point, Anna had to make P. leave the room.

That fall, P. took more than half a dozen mothers of children with disabilities — friends from her support group — to meet with Anna and learn about facilitated communication. (One soon began working with Anna.) ‘‘I thought it was the best thing since sliced bread,’’ P. said.

Wesley was enthusiastic, too. When he met other users of facilitated communication, he noticed that D.J. was among the very few who weren’t white and didn’t come from some degree of privilege. ‘‘I was proud,’’ he said in court. ‘‘Who wouldn’t be?’’ His brother ‘‘was the Jackie Robinson of F.C.’’

The method that Anna used with D.J., and with several other clients at the time, was devised some 40 years ago to help a girl with cerebral palsy named Anne McDonald. Born in 1961 to a family that ran a dry-­cleaning business in a railway town 60 miles north of Melbourne, Australia, she came out feet first, with signs of foetal distress. For the first hour of her life, she could not breathe on her own. At 3, she was given a diagnosis of spastic quadriplegia with severe mental retardation and sent to the St. Nicholas Hospital for children with profound disabilities.

Even as a teenager, McDonald was small enough to fit into a baby stroller and weighed less than 30 pounds. Her eyes were often crossed, and her arms, neck and tongue remained in constant motion. When Rosemary Crossley, then an assistant at the Mental Health Authority, first saw McDonald, she was bone thin and writhing on the floor. Neither McDonald nor any other child had toys or wheelchairs, Crossley has said, and they weren’t getting an education, either. ‘‘Just the floor and a cot,’’ is how she remembered it.

In 1974, Crossley selected McDonald and seven other children for a special play group. She called them ‘‘bean baggers’’ — most were so physically disabled that they could sit only in beanbag chairs. Three years later, she turned the play group into a communication study. Her plan was to ask the kids to point at objects, photographs and words, and thus find a way for them to voice their basic needs. She started with McDonald: ‘‘ ‘Annie, I think I can teach you to talk,’ ’’ she recalls in ‘‘Annie’s Coming Out,’’ the memoir she wrote with McDonald. ‘‘ ‘Not with your mouth … but with your hands, by pointing to pictures of things.’ ’’

The problem was that McDonald had a lot of trouble pointing. When she tried to move her arm, Crossley wrote, it would ‘‘shut up like a rabbit trap,’’ sometimes snapping back against her face. Crossley realized that she would have to keep it balanced. ‘‘I was acting as a responsive item of furniture, not moving her arm but simply facilitating her own movement.’’

The supported pointing worked brilliantly. Now, McDonald could pick out word-blocks and form sentences like ‘‘I want a book, please.’’ Just two weeks into this training, Crossley took out a magnetic board with letters on it to see if McDonald could spell things on her own. Less than a week later, McDonald pointed to the letters ‘I’ and ‘H’ and then to 11 more, producing ­‘‘IHATEFATROSIE.’’ ‘‘This is the first sentence Annie ever spelled,’’ Crossley wrote. ‘‘Annie had freed herself.’’

After a month, McDonald demonstrated a familiarity with local politics. In two months, she was doing fractions. It all happened so quickly that some of Crossley’s colleagues wondered if her assisted pointing might be a fraud. Perhaps Crossley had controlled the children’s hands herself, guiding them to shapes and letters in the way that people move the pointer on a Ouija board.

Crossley had the same concern. ‘‘What I did not know was whether I was subconsciously manipulating her,’’ she wrote, ‘‘or imagining her hand movements over the letters and making up sentences to fit what were really random twitchings.’’ But she became convinced that the method worked after McDonald started spelling things with other people — including references to private jokes that no one else could have known. How had she learned so much so fast? She had worked out the rudiments of language by watching television and overhearing nurses’ conversations. She had learned arithmetic by counting slats on the barriers that enclosed her cot.

Soon after McDonald turned 18, she went to court for the right to leave St. Nicholas. In a proceeding, she was shown an arbitrary pair of words — ‘‘string’’ and ‘‘quince’’ — while Crossley was not in the room. Then she had to spell them out with Crossley’s help. ‘‘String’’ and ‘‘quit,’’ she wrote. Not exactly right, but close enough. The judge accepted the method and ruled that McDonald was competent to make her own decisions. Addressing the press right after, she spelled: ‘‘Thank you. Free the still imprisoned!’’ McDonald went on to graduate from college and died at 49.

The philosophy that drove Crossley’s work, one of radical inclusion, was gaining traction in the world of special education. In 1984, the same year that ‘‘Annie’s Coming Out’’ was made into a movie, Anne Donnellan, a professor at the University of Wisconsin, Madison, published a sort of manifesto for disability rights. An academic paper called ‘‘The Criterion of the Least Dangerous Assumption,’’ it advised teachers on how to treat disabled children: When you assume they will never function as adults, when you shunt them into special classes and give them toys meant for younger children, you make them victims of your meagre expectations. It’s better to treat every child as if he or she has hidden talents, Donnellan warned, because if you do the opposite, what happens if you’re wrong?

Assuming competence was the founding principle of Crossley’s method. But her work would not become widely known until a Syracuse professor of education named Douglas Biklen visited Crossley’s Melbourne clinic in 1988. He described that trip — along with a second one a few months later — in a bombshell paper for The Harvard Educational Review in August 1990. The implications were enormous, Biklen wrote. Those who had been categorized as having among the ‘‘lowest’’ intellectual capacities could now tell the world they existed; they could say, as he put it, ‘‘We will reveal ourselves, we will show our creativity, when we feel appreciated, when we are supported.’’

With Biklen’s help, facilitated communication spread through the world of disability services with a near-­religious fervour. At Syracuse, he set up an institute that trained teachers, parents and social workers. Among its earliest disciples was Anna’s mother, Sandra. When she heard about the method, she set out for one of Biklen’s workshops on the night train. Back in Michigan, she had Anna serve as the videographer of her early sessions.

At the peak of F.C.’s popularity, a workshop could draw 1,000 people, says Christine Ashby, who now runs Biklen’s institute. By October 1991, the technique had made its way into this magazine, in an article that began with a boy in Syracuse who was thought to have an I.Q. of 37 until he started using facilitated communication; he received a standing ovation when he graduated from high school. Three months later, Diane Sawyer did an Emmy-­winning segment on the method for ‘‘Primetime Live’’ on ABC. ‘‘For decades, autism has been a dark mystery,’’ she told her viewers, ‘‘a disorder that seems to turn children in on themselves, against the world. Tonight, however, you are going to see something that has changed that. Call it a miracle. Call it an awakening.’’

Not everyone was convinced. Howard Shane, a speech pathologist and professor at Harvard Medical School, was at a conference in Stockholm in the summer of 1990 at which Crossley presented her data. He had been trying to help nonverbal people communicate for more than 15 years, using keyboards linked to voice synthesizers and other tools: Press a button, get a word. In Sweden, Crossley claimed that she had made stupendous breakthroughs just by squeezing a shoulder or cradling a hand.

‘‘It just didn’t fit with anything that I or anybody had ever seen before,’’ Shane says now. ‘‘Either she saw something that nobody saw, or there was something wrong with me, in that I was dismissing people as being retarded when all you had to do was just believe that they could do it.’’ He snorted as he recalled Crossley’s presentation: ‘‘We were sitting in the back of the room, and I turned to my friend and said, ‘This is the craziest thing I’ve ever heard.’ And then I said, ‘But what harm could it do?’ I actually said that to her. I said, ‘But what harm can it do?’ ’’

Shane got his first call from a district attorney a few months later. A nonverbal adult in Northampton, Mass., had accused someone of sexual assault while typing with her hand supported. The story turned out to be untrue, but it was not the only accusation of this kind. Facilitated communication arrived in the United States during a hysteria over child sexual abuse, fuelled by memories ‘‘recovered’’ during hypnosis or elicited from children. By the end of 1994, some 60 users of facilitated communication had made claims of sexual abuse.

As these cases multiplied, Shane and others began to look more closely at whether facilitated communication could be trusted. When Betsy Wheaton, an autistic 16-year-old from Maine, typed out that her father ‘‘makes me hold his penissss,’’ Shane, brought in to evaluate her, arrived with a battery of tests. First, he showed Wheaton and her facilitator, a speech and language trainer named Janyce Boynton, a set of pictures — a shoe, a spoon, a ball — and asked Wheaton to identify them. In some trials, Wheaton was shown the same pictures as Boynton; in others, she was shown different ones that Boynton wouldn’t see. No matter which she saw, the results were the same: Wheaton spelled out whatever was on the pictures shown to Boynton.

D.J. met with Stubblefield every other weekend in her office in Conklin Hall. Credit Jonno Rattman for The New York Times  D.J. met with Stubblefield every other weekend in her office in Conklin Hall.
Credit Jonno Rattman for The New York Times

Next, Shane started asking Wheaton for information that Boynton didn’t know — the colour of her parents’ car, the names of her family pets. Wheaton pointed to the letter board with Boynton’s help, but her answers were inaccurate. For a final test, Shane took Wheaton into the hall and showed her a key and other things from his pocket. Back in the room, he asked her to name the objects she had seen. With Boynton supporting her arm, she failed to spell out anything at all.

The results of these experiments matched those from published studies that used a similar controlled approach — asking typers to name objects their facilitators either could or couldn’t see. In almost every case, it seemed that the messages nonverbal people typed were not their own. One early review of this research found just four subjects whose communications might be valid out of 126 people tested. A subsequent review of 19 studies of facilitated communication performed during the 1990s found zero validations across 183 tests.

It looked as if the technique had been debunked. Professional societies put out formal statements questioning or condemning its use. In late 1993, ‘‘Frontline’’ aired a special that told Betsy Wheaton’s story, among others, and suggested that facilitated communication was an elaborate display of what psychologists call the ideomotor effect, in which an external suggestion or a person’s beliefs or expectations trigger unconscious movement: The facilitator was guiding the typing, even if she didn’t know it. In early 1994, ‘‘60 Minutes’’ ran a similar exposé called ‘‘Less Than a Miracle.’’ Public funding for the technique in schools started to dry up. Attendance at Biklen’s workshops in Syracuse dropped sharply.

Facilitated_Communication_Prisoners_of_Silence from Dr Bob on Vimeo.

Even Anne McDonald’s story turned out to have a set of complicating facts. Before the ‘‘string’’ and ‘‘quince’’ test that won her case in court, she was subjected to a series of investigations that came to different, often contradictory conclusions. Cheryl Critchley, a freelance journalist, has documented several harrowing accusations made by McDonald and Crossley’s other typers. McDonald said the hospital superintendent had tried to smother her with a pillow, and another young woman said he had forced a noxious liquid down her throat.

The backlash against facilitated communication ‘‘was horrible,’’ says Anna’s mother, Sandra, who still acts as a facilitator with clients and testified in an F.C.-­related sexual-­abuse case in Michigan as recently as 2008. (She also travelled to Australia in 2005 to meet with Crossley and McDonald.) ‘‘In the early 1990s, people were so excited, and we were able to get a lot of people going on at least some communication. Then came the pushback, and a lot of schools said you can’t do it anymore and literally took away the only communication system that had ever worked for many of their kids.’’

D.J. is about five feet tall, with skinny arms and legs and the lolling head of a punch-drunk boxer. He has a tendency to rock from side to side and to bang his face against his knees; his nose looks as if it has been broken once or twice. When he is anxious or upset, he puts his hands in his mouth and bites them, leaving open sores. In a better mood, he likes to play with plastic coat hangers or scoot over to the refrigerator for a snack. D.J. loves to eat; he loves to be outside; he loves to look up at the ceiling lights.

Sitting at the keyboard, D.J. also seemed to have a lot to say. His messages were simple and misspelled at first, but his skill and fluency improved. Eventually he could hit a letter every second, and if Anna guessed the word before he finished typing, he would hit the ‘‘Y’’ key to confirm. Anna brought books for him to read, Maya Angelou and others, and discovered that he read like a savant — 10 pages every minute. (She turned the pages for him.) They discussed the possibility of his enrolling in a G.E.D. program.

As D.J. came into his own, Anna kept her mother posted on his progress. In the spring of 2010, Sandra asked if D.J. might like to give a paper for a panel she was organizing at a conference of the Society for Disability Studies in Philadelphia. The panel was on Article 21 of the United Nations Convention on the Rights of Persons With Disabilities, which lays out the right to freedom of expression and opinion. D.J. wasn’t sure he could do it, Anna said, but she convinced him he should try.

For the next six weeks, they worked together on his presentation — a one-page essay that D.J. wrote with Anna’s support and constant feedback over many sessions at his adult day program. In early June, D.J. travelled to the conference with his mother and brother, and then Wesley read D.J.’s paper to an audience of some 40 people. ‘‘The right to communication is the right to hope,’’ the essay said. ‘‘I am jumping for joy knowing I can talk, but don’t minimize how humiliating it can be to know people jump to the conclusion I am mentally disabled.’’ In Philadelphia, Anna and her mother typed with D.J., too, and introduced him to other users of facilitated communication. Two of D.J.’s fellow typers on the panel, Jacob Pratt and Hope Block, had just become engaged. They had been going on ‘‘supported dates’’ — flirting with each other through F.C., planning get-­togethers, negotiating intimacy — for about a year.

Anna found that her relationship with D.J. was getting deeper, too. All the time they spent working on the essay, all the books they read together and all their conversations had changed the mood between them. ‘‘I began to gradually be aware that I was having romantic feelings,’’ she would later testify. ‘‘I became aware of things when he wrote the essay. It wasn’t all that original — people who had had the same experience had said similar things — but with all the spelling mistakes, he had a way of putting things.’’

She had also grown more involved with D.J.’s family. When P. came down with walking pneumonia and needed urgent care, Anna showed up at the hospital. At one point, P. baked a pie for Anna’s family. ‘‘I could have called her Aunt Anna or Cousin Anna,’’ Wesley said during a deposition. ‘‘She was like family.’’ In October, P. went with Anna and D.J. to a second conference in Milwaukee. The paper that he gave there, read aloud by Anna’s father, ended up being published in a peer-­reviewed academic journal.

That fall, D.J. started sitting in on a 400-­level course in African-­American literature at Rutgers. A Rutgers undergraduate named Sheronda Jones, recruited by Anna, used F.C. to help him do his homework. ‘‘He pretty much read the books,’’ Jones remembered in a statement to the police. ‘‘I can’t tell you what he read. And he typed out the information.’’ She added, ‘‘I know because one of my roommates was in the class with him, and they pretty much wrote some of the same things.’’

A man who had been said to have the mental capacity of a toddler was now on the conference circuit and taking college classes. At last the world could get to know D.J. and understand his mind. ‘‘He’s an extremely ethical person — it’s one of the things that impressed me about him,’’ Anna said in court. ‘‘You know how you can meet somebody who’s extremely physically attractive, and then when you get to know them, they have such a horrible personality that they don’t really look attractive to you? It works the same way in reverse. If somebody has an interesting, engaging mind and good heart and a beautiful soul, that is transformative. It shows through, and you love the person. And so you love being close to them, and you love the body that they’re in, because that’s the body that they have.’’

Even as Anna came to feel this transformation, even as it seemed to her that D.J.’s world had opened up, her relationship with his family was not as stable as it seemed. One problem was that no matter how much progress D.J. made with Anna, his typing never worked with his mother or brother. They spent many hours training in F.C., but neither had success. Anna typed with D.J.; Anna’s mother typed with D.J.; Sheronda Jones typed with D.J. But somehow, P. and Wesley always failed.

Wesley remembered that he would take hold of D.J.’s arm, and they would type a single word together: the. Then nothing. Anna, he recalled, would tell him: ‘‘You have to keep practicing. You have to sit down and work with him and just continue at it. D.J. prefers to facilitate with some people more than others.’’ P. said that when she tried to grab D.J.’s hand, he would pull it away or scratch her. Anna told her to stop mothering him.

In January 2011, Wesley grew so frustrated that he went online to find the video about F.C. that Anna had shown in class two years before. He wanted to see how people helped the woman in the film. ‘‘I was looking for a model to pattern myself after,’’ he said during a deposition. But when he started searching, he came across a different film — not ‘‘Autism Is a World,’’ but the ‘‘Frontline’’ investigation from 1993.

Other things raised Wesley’s suspicions, too. Some of D.J.’s messages didn’t seem as if they came from him. D.J. typed with Anna that he didn’t like gospel music, but Wesley knew his brother loved to sway in church, doing what Wesley called the ‘‘Stevie Wonder dance.’’ D.J. also typed, through Anna, that he enjoyed red wine — especially from a label called Fat Bastard. But Wesley spent Communion Sundays with D.J. and said he never showed much interest in drinking wine. ‘‘It seemed very class-­based,’’ Wesley said. ‘‘It seemed very much of what she liked but not what [D.J.] liked.’’

While Wesley harboured private doubts, P. began to feel put off by Anna’s interventions. They quibbled over the clothes D.J. wore and the records he listened to, and they debated ­whether D.J. should find his own place to live. I’m his mother, P. said. Let him be a man, Anna told her.

In March 2011, Anna invited D.J. to Rutgers to give a presentation about his disabilities. Students asked him questions:

‘‘What are your hopes and dreams?’’

D.J. typed that he would like to go to college, become a writer and work in disability activism.

‘‘Would you like to be in a romantic relationship?’’

‘‘I want that more than anything,’’ D.J. answered. ‘‘But I don’t know if that’s possible for people with disabilities like mine.’’

That was the moment Anna knew she couldn’t keep her feelings to herself. ‘‘I wanted to put my arms around him and say: ‘You can have that. I love you,’ ’’ she later testified. A week later, at his afternoon day program, Anna finally told D.J. how she felt. ‘‘I love you, too,’’ he typed. She said she had known that for a long time, and he said he had known it, too. And then he typed, ‘‘So now what?’’

They went back and forth on this question. ‘‘He grilled me on how much I really loved him, how committed I was to him, how I felt about my husband,’’ Anna wrote in an account of their relationship that she compiled six months later at her lawyer’s request. D.J. wanted to know if she would someday marry him. ‘‘I said: ‘Please, I love you very much, but please don’t ask me that just now. I need time to think through everything.’ He said that he was sorry. He didn’t mean to push that hard. It was childish of him.’’

After many hours of discussion and several visits to the day program, Anna finally convinced D.J. that she meant all that she had been saying. ‘‘O.K., I believe you really do love me,’’ he typed. ‘‘But are you physically attracted to me?’’

‘‘That broke my heart all over again,’’ she said in court. ‘‘I said, ‘I’m in love with you the whole way.’ Then he said, ‘Kiss me,’ and I did. He said, ‘Kiss me again.’ I kissed him again.’’

D.J. typed, ‘‘Do you think it’s even possible with my cerebral palsy for us to make love?’’

They met the following Sunday at D.J.’s house, while his mother was at church. They tried to kiss while lying down on D.J.’s bed, on the theory that it would be easier, given his impairments. But D.J. kept sitting up, and then he lowered himself onto the floor. Anna offered him the keyboard and asked if anything was wrong. Nothing’s wrong, he typed, he was very happy, but also overwhelmed — he needed a minute. Anna said O.K., and D.J. scooted out into the hall. ‘‘Look, whatever we’re going to do, you set the pace,’’ she told him. ‘‘You call the shots. This is all about what feels right for you. I just love being close to you in whatever way works for you and for your body. No pressure.’’

A few minutes later she was naked.

‘‘I’ve dreamed about this,’’ he typed.

At his request, she said, she pushed down his pants, loosened his diaper and performed oral sex on him. They never finished — ‘‘I was close,’’ D.J. typed — but they had tickets for a disability-­related film festival at the Metropolitan Museum of Art. They were going to see ‘‘Wretches & Jabberers,’’ a 2010 documentary about F.C. produced by Douglas Biklen, the founder of the Syracuse institute.

A week later, Anna recalled, the couple tried to have sex in Anna’s office at Conklin Hall, with condoms, a blanket and an exercise mat. It didn’t work, and they ended up just sitting on the floor together, Anna talking and D.J. typing. Anna asked him if he might want to see some pornography, ‘‘to see what things looked like and different positions people used and that sort of thing.’’ She said she wouldn’t want to pay for porn or watch anything offensive, but that she would be O.K. with finding free clips on the Internet that depicted couples engaging in mutually pleasurable intercourse. He demurred, typing out that in his view the women in porn are being exploited, and that, besides, Anna was more beautiful than any porn star, and he really wanted to be thinking only about her when they finally made love.

The following Sunday in her office, it finally happened. D.J. ‘‘was very happy with what was going on,’’ she said in court. If he needed to say something, he would bang the floor, and she would pause to set him up with the keyboard. ‘‘It was a few hours from getting undressed to afterglow,’’ she said. When they were finished, he typed: ‘‘I feel alive for the first time in my life.’’

It’s not that Anna didn’t know of F.C.’s checkered reputation. But like many in that insular and passionate community of users, she thought the method had been unfairly pushed aside. Anna knew it worked, first-hand.

She had watched her mother use F.C. for 20 years. In 2000, Sandra introduced her to an F.C. user with autism named Nick Pentzell. Anna was teaching at Temple University. He sat in on her classes. (She also typed with him herself.) At Rutgers, Newark, Anna worked regularly with several people other than D.J., including a nonverbal teenage boy named Zach DeMeo. Zach, now 22, has autism and lost his speech while a toddler. Like D.J., he met Anna through an older brother who was enrolled at Rutgers. Soon they were having weekly or biweekly sessions at Anna’s office. ‘‘It changed his life,’’ says Zach’s mother, Toni, a substitute teacher on Long Island. ‘‘She was so selfless and devoted. She saw us on weekends. She left her family to help my son.’’ Anna and Zach have been friends for six years, and they stayed in touch even as she prepared for trial. ‘‘She speaks to my son as an equal,’’ Toni says. ‘‘She treats him as a human being. If he told me he was in love with her, I would believe him.’’

As for D.J., once Anna decided that he could express himself — once he told her several things that she said she could not have figured out herself, like his nickname and his date of birth — then her mind was free of doubt. ‘‘I knew [D.J.] was the author of his typing,’’ she said in court. ‘‘Why would I question that?’’

Those who do raise doubts about F.C. tend to go too far, she wrote in a 2011 paper for Disability Studies Quarterly: ‘‘Although opponents of F.C. present themselves as engaging in scientific debate, some instances of continuing anti-­F.C. expression meet the criteria to count as hate speech.’’ She conceded that there were studies showing that the method didn’t work, but there were others that indicated just the opposite. The sceptics’ dismissal of F.C., she argued, their insistence that it never works, could be taken as a form of ableist oppression.

Different Supports Used in Facilitated Communication | Practitioners of F.C. steady typers by holding them at the elbow, shoulder or forearm. ‘‘It looks like a dance, like you’re not doing a thing, but you’re really doing five things at once,’’ says Marilyn Chadwick, a master trainer and Stubblefield’s own F.C. mentor. Credit Illustrations by Brown Bird DesignDifferent Supports Used in Facilitated Communication | Practitioners of F.C. steady typers by holding them at the elbow, shoulder or forearm. ‘‘It looks like a dance, like you’re not doing a thing, but you’re really doing five things at once,’’ says Marilyn Chadwick, a master trainer and Stubblefield’s own F.C. mentor. Credit Illustrations by Brown Bird Design

‘‘We just need to recognize that research does a thing,’’ Christine Ashby, the head of the institute in Syracuse, said at last year’s annual summer conference for typers and facilitators. ‘‘Research gives us a piece of information, but it’s very dangerous when that piece of information gets used to take away people’s way of gaining access to the world.’’

Almost 300 people had convened at the city’s Sheraton hotel, including parents, siblings, support staff and F.C. trainers, and about 75 typers, almost all of whom were on the autism spectrum. Most were children and teenagers; a few had cerebral palsy. In the hotel’s ballroom, the typers sat with their facilitators and listened to the presentations, or they got up and walked in circles. They also laughed and groaned and blurted out a score of chirps and mournful cries — whooo, whooo, unna-unnahhh! Unna-unnahhh!

‘‘For a really progressive view of disability, there’s no other place to be,’’ a graduate-­student organizer told me on the first day. ‘‘It’s like we’re in this little bubble. It’s an amazing bubble!’’

At one point during the conference, Ashby led a session for facilitators called ‘‘Circling the Wagons: How Shifting Definitions of ‘Research’ Keep the Voices of F.C. Users Out.’’ Before she set out on a critical review of the studies from the 1990s, she apologized, half-­joking, for the ableism of that metaphor: double-­blind. Such insensitivity was not surprising from the F.C. sceptics, she said, who are more concerned with scientific method — with cold, quantitative research — than with real, lived experience.

When stories like Betsy Wheaton’s started to emerge in the 1990s, proponents of F.C. acknowledged that their method was subject to abuse. People rushed into it without proper training and then fell victim to their own enthusiasm, Ashby said. A responsible facilitator, she explained, always checks her client’s eyes to make sure he is looking at the keyboard. She always pushes backward against his hand or arm, steadying his movement instead of guiding it. She always tries to ‘‘fade support,’’ so that he can type more independently. And when something sensitive comes up — like a claim of abuse — she checks the message with another ‘‘naïve’’ facilitator.

In Syracuse, I met several people who started with F.C. and later learned to type without support, including Jamie Burke, a young man who once worked with Rosemary Crossley and now spelled out his words to me with no one touching him. His messages were somewhat cryptic: ‘‘Law of fair and just,’’ he wrote, and also, ‘‘I love challenging my correction.’’

Jamie proves that the method works, Ashby said during the ‘‘Circling the Wagons’’ session, but the sceptics claim that he would have learned to speak and type anyway and that F.C. might even have slowed him down. ‘‘Simply achieving success means you didn’t need support in the first place,’’ Ashby said with exasperation. ‘‘Several years ago, one of the biggest F.C. sceptics offered something like $100,000 to any F.C. user who would go and pass his double-­blind test,’’ Ashby said. ‘‘Do you know how badly I wanted to get one of the people I know and love to go do that? Just because I wanted to stick it in his face and use that money to do good work in the world. But I would never subject somebody to that.’’

‘‘No!’’ cried a facilitator in the room.

‘‘Who would do that?’’ Ashby said, shaking her head. ‘‘That is the most inhumane thing I’ve ever heard of. You go in to see this person who despises you, who thinks you are incompetent and incapable. And you go perform in front of them, like a show pony. And if you can do it, then he’ll still say that you probably weren’t autistic to begin with.’’

The proponents of F.C. have argued from the start that when typers fail in formal testing, it’s because they become confused or feel antagonized; they freeze up in the face of inquisition. Mainstream experts have no patience for these evasions. If the method works for someone, they say, then have that person tested — and don’t claim that he hides his skills only under careful scrutiny. Yet their admonitions go unheeded by a growing number in the autism community. Ashby said that she has seen a resurgence of F.C., but that ‘‘it’s happening much more carefully this time.’’ Recent surveys of parents, caregivers and special-­education teachers find that less than 10 percent now use facilitated communication. The practice has even made its way back into pop culture, too. In 2013, the memoirs of a Japanese teenager with autism, who is an F.C. user, were translated into English by the novelist David Mitchell and his wife, K.A. Yoshida, as ‘‘The Reason I Jump.’’ On ‘‘The Daily Show,’’ Jon Stewart called it ‘‘one of the most remarkable books I think I’ve ever read.’’

Meanwhile, because of past scandals, facili­tated communication has been quietly rebranded. In 2010, the Facilitated Communication Institute in Syracuse changed its name to the Institute on Communication and Inclusion. ‘‘We need to do more on F.C., but we can’t call it that,’’ said John Hussman, a major donor to the institute who runs a $6 billion mutual fund and whose son uses the technique. He had just given a talk on the neuroscience of what is now often termed ‘‘supported typing.’’ ‘‘We have to come up with some other name to fly under the radar and maintain credibility,’’ he said.

At the conference, I interviewed, through typing, a teenager named Matt who spoke only in echolalic phrases — things he had heard and couldn’t help repeating. ‘‘Aunt June will be right back!’’ he kept shrieking. ‘‘Nobody’s having bread! Where’s Aunt June?’’ But with a facilitator’s left hand on his shoulder and her right hand beneath his armpit, he spelled out a sober proclamation: ‘‘I came here to affirm a commitment to facilitated communication. I would spend life locked in a prison of silence without it.’’

Later that afternoon, I met a 20-year-old man named John who had a prominent under bite. John had been assessed as having the mental capacity of a 3-year-old, but using F.C. he could write poetry. His father handed me some printouts of John’s writing (‘‘The place to discover the ember of love is worlds away but so close/in the land of the nonverbal autistic’’), then grabbed John’s finger so we could have a direct exchange. ‘‘Know that we are intelligent,’’ John’s finger typed into the keyboard.

‘‘We figured out that he taught himself to read at age 3 by reading a dictionary,’’ his mother said. ‘‘Now he’s a senior in high school.’’

Wasn’t she worried by the studies showing that F.C. doesn’t work — that the messages aren’t always real?

‘‘From a parent’s perspective, who cares about the research?’’ she replied. ‘‘The research will work itself out. In the meantime, I want to talk to my son.’’

Before Anna showed up at D.J.’s house that Memorial Day in 2011, she warned him that his mother and brother might be upset by their relationship. They might even ban her from seeing him, she said, and as his legal guardians, they had the right to do so. ‘‘They would never do that to me,’’ D.J. typed back. ‘‘They love me too much.’’

Some weeks after the blow-up that ensued, P. called Anna on her cell phone and asked her to explain herself. ‘‘Well, look,’’ Anna said. ‘‘I was not pleased to realize that I was feeling that way. I didn’t think it was professional. I mean, I’m married and all that stuff — it wasn’t something that I was looking for, and so I just kind of really, really repressed it.’’ She added that D.J. was the only person she had been with, other than her husband, in more than 20 years.

Anna and her husband married in June 1989, when she was still a teenager in college and Roger was 24, a tuba player for the Detroit Symphony Orchestra. They had a son six years later and a daughter a few years after that. In 2010, when Anna first began to fall in love with D.J., she and her family were living in a modest house in West Orange, N.J.

 Stubblefield’s former office on the Rutgers campus in Newark, in a photograph introduced as evidence at her trial. Credit Essex County Prosecutor’s Office

Stubblefield’s former office on the Rutgers campus in Newark, in a photograph introduced
as evidence at her trial. Credit Essex County Prosecutor’s Office

‘‘The marriage wasn’t great,’’ Anna later said in court, ‘‘but I wasn’t at a state of wanting imminently to end it.’’ Eventually, she said, it came down to a choice of hurting Roger or hurting D.J. ‘‘There wasn’t any choice. I wasn’t going to hurt [D.J.].’’

Roger declined to be interviewed for this article, but in testimony at a pre-trial hearing, he said he realized that his marriage was in jeopardy only when ‘‘the prosecutors came and banged down the door.’’ Even then, he and Anna went to couples’ counselling. The therapist’s first words, he said, were, ‘‘Anna, you must stop dwelling on this relationship with [D.J.].’’

Roger may have hoped that she would follow that advice, but when he went through the browser history on their home computer, he found that Anna had been looking up real estate listings. In a fury, he took the 12-page account of her relationship with D.J., the one she had written for her lawyer, and emailed it to D.J.’s family and to the prosecutor’s office. ‘‘If you’re so proud of this so-­called relationship,’’ he remembered thinking, ‘‘then let the whole world know.’’

A ridge of high pressure slid into New Jersey right after Memorial Day, pulling sticky air up from the Gulf of Mexico. Temperatures surged into the triple digits in early June and stayed there, kicking off what would be among the very hottest summers in the state’s history. Barred from seeing the man she loved, not sure if his family would ever reconsider, Anna became desperate.

‘‘I just wanted to follow up with [D.J.] as to why I wasn’t there today,’’ she said in a voice-mail message to P. a few days after they first discussed the relationship. The next week, she tried again: ‘‘It’s Anna. Wondering if things are going to work out. … ’’

Finally, Anna went to D.J.’s house one evening, uninvited, so she could speak with his mother face to face. She parked outside just before 6 p.m. and waited for P. to arrive from work. ‘‘We have to talk,’’ she said when P. headed past her to the door.

‘‘About what?’’ P. said.

She phoned Wesley and took Anna around to the back porch, so the home health aide wouldn’t hear what they were saying. There, Anna promised to sign a formal declaration saying she would leave her husband in five years and marry D.J.

‘‘Anna, go home to your children,’’ P. responded.

When Wesley arrived and saw what was going on, he confronted Anna with his doubts about the typing. ‘‘If you believe that [D.J.] can do this F.C. thing, then if I ask [D.J.] a question, he should be able to give me the right answer.’’ Anna agreed to the test, and Wesley asked, ‘‘Who is Georgia?’’

With Anna’s hand on his, D.J. typed an answer, very slowly, over several minutes: ‘‘Georgia in high school worked for Mom.’’

Georgia, who died before Anna got to know the family, was D.J.’s ‘‘auntie.’’ She had often cared for Wesley and D.J., helping out when their mother was at work. Wesley said later that Georgia was D.J.’s other mom, that he loved her as much as anyone and that she made the best scrambled eggs and toast in the world.

Then Wesley said he had a second question, and Anna objected.

‘‘Well, this is just a follow-­up question,’’ he continued. ‘‘Tell me who Sally is.’’ Sally was a nickname that D.J.’s family used for Georgia.

Now D.J. typed, with Anna’s help, something about ‘‘Mom’s little nephew,’’ but the answer trailed off. As Anna remembered it, Wesley shook his head and said he hoped Anna could work out her marital difficulties. (In court, Anna’s lawyer argued that the answers to Wesley’s questions were correct: Georgia had ‘‘worked for Mom,’’ in the sense of helping her with child care, and she was ‘‘Mom’s little nephew’s kin.’’)

‘‘Thank you for everything you’ve done,’’ P. said.

‘‘Don’t thank me for what you’re taking away,’’ Anna said.

Wesley walked Anna to the door, and she drove off. But as soon as she turned the corner, she had to pull over; she was shaking too much to drive. Wesley later told the police that Anna had been so distraught, he was afraid that she might be suicidal or that she would ‘‘go home and do something to her kids.’’

‘‘That was the worst day of my life,’’ Anna later wrote.

 Stubblefield collapsed onto the defense table this month after she was convicted of aggravated sexual assault and told that further bail would be impossible. Credit Jonno Rattman for The New York Times

Stubblefield collapsed onto the defence table this month after she was convicted of aggravated sexual assault and told that further bail would be impossible. Credit Jonno Rattman for The New York Times

The next few weeks in Newark were even hotter than the ones that came before. At a zoo just down the road from P. and D.J.’s home, keepers fed the cougars ice pops made of blood. As the scorching summer days went by, Anna heard nothing more from D.J.’s family. She grew depressed and couldn’t eat; she said she lost 20 pounds.

At the beginning of August, in a final reckless measure, she wrote an email to the director of D.J.’s afternoon day program. She said that D.J.’s family was ‘‘unsure’’ if she could see him anymore, but she asked if she could visit just one more time. ‘‘It’s a mess, and really frustrating for me, because it has more to do with issues within the family and who gets to make decisions about [D.J.],’’ she wrote. Could she just come in ‘‘quietly,’’ so she could tell D.J. why she disappeared? She had to let him know that she still cared about him, that she was trying to fix the situation.

The director called the family right away. Wesley and his mother had been ready to let matters rest, but when they heard about the email, they decided to take action. On Aug. 7, Wesley wrote a letter to the dean of faculty at Rutgers, Newark, and told her that Anna was harassing his family. He cast his complaint in terms that harked to Anna’s scholarship in racial justice: ‘‘Her continued attempts to see [D.J.] and her insinuation that my mother and I do not know what is in [D.J.’s] best interest is insulting and straddles the racial assumptions about the capacity of black parents to properly raise their children.’’

He had accused Anna of turning into her own worst nightmare. ‘‘White people uphold white privilege in ways that they repress,’’ she once wrote. Even when they mean to help, they behave ‘‘in ways that are disrespectful and that undermine the self-­empowerment of the people whose space they invade.’’ Had Anna done the same to D.J. and his family? A professor of ethics who wrote passionately about the rights of the disabled was accused of sexually assaulting the person she was most determined to protect — a black, disabled man; a child of a single mother; a member of the most vulnerable among the vulnerable.

In mid-­August, D.J.’s family went to the police, and when P. spoke to Anna for the last time on Aug. 22, their phone call was recorded.

‘‘Yes, [D.J.] wanted to be physically involved with me, and I wanted to be physically involved with him,’’ Anna said. But, she continued, ‘‘our relationship is not just about or primarily about the sex part. We love each other very, very, very much, and I wouldn’t have sex with somebody that I didn’t love.’’

P. listened carefully from her end of the line, as did two detectives from the Essex County Special Victims Unit. Anna didn’t know it yet, but her relationship with D.J. and the ‘‘least dangerous assumption’’ from which it began — that he was mentally sound and thus capable of consent — had put her in a very dangerous spot.

‘‘Were you really serious about this?’’ P. asked, baiting her for details.

‘‘Yeah, I am,’’ Anna said, her voice shaky. It had been two months since she had seen D.J., and she was miserable. ‘‘I mean, you have to understand, literally, I’m lucky if I get through 20 minutes of any day without thinking about him. That’s how much I miss him.’’ She went on, ‘‘If — if — if I did things like bite my hands, I’d be biting my hands right now, too.’’

How, she wondered, could something ‘‘so special and so incredible for both of us’’ have been turned ‘‘into some kind of horrible, wrong thing?’’

‘‘I wouldn’t have fallen in love with him if he wasn’t capable of consent,’’ she would later say in court. ‘‘I wouldn’t have fallen in love with him if he wasn’t someone interested in reading books and talking about them. He was my best friend.’’

Last month, Anna Stubblefield went on trial for two counts of first-­degree aggravated sexual assault, the same charge that would apply to someone who had inflicted severe injury during a rape or participated in a violent gang rape. The state set out to prove that D.J. was incapable of consent to sex or physically helpless to resist it, and that Anna either knew or should have known the same.

D.J. went to court only once, presented by the prosecutor as a ‘‘demonstrative exhibit.’’ His mother led him in, holding up his tiny frame at the armpits. She walked him down the aisle and over toward the jury, as his head rolled back and his eyes seemed to focus on the ceiling lights. ‘‘Jury, this is my son,’’ she said. Then she turned D.J. to face the judge. ‘‘Your honour, this is my son.’’ If D.J. spotted Anna in the courtroom — it would have been the first time in four years — he did not react. Anna’s lawyers later argued that the prosecutor tried to block her from his view, so D.J. wouldn’t reach for her as he used to.

Each side called in outside experts to meet with D.J.: Howard Shane of Harvard for the prosecution and Rosemary Crossley for the defence. But before the trial began, the judge ruled that facilitated communication failed New Jersey’s test for scientific evidence. That put Anna’s defence team in a legal straitjacket. Its entire case rested on the fact that D.J. could communicate through his keyboard, or that at least Anna reasonably believed he could. Now much of the evidence of that communication had been summarily tossed out. The judge ruled that Anna, and only Anna, could testify about the typing and why she thought it worked. She would have to win the jury’s sympathy alone.

On the morning of Oct. 2, after the jury had deliberated for less than three hours, a red light flicked on in the courtroom, signalling a verdict. Anna waited in her charcoal suit and sling-back shoes and the silver bird brooch that she had worn nearly every day in court. Her mother sat in the gallery, holding hands with Anna’s older brother, Michael, a computer scientist who had flown in from Wisconsin. Throughout the trial, several benches in the courtroom were filled with a rotating cast of Anna’s friends and fellow activists: Nick Pentzell, the autistic man from Pennsylvania; Devva Kasnitz, an anthropologist and former president of the Society for Disability Studies, who has a severe speech impediment; Sue Rubin, the woman from the film Anna had shown in class; Toni DeMeo, Zach’s mother. On the courtroom’s other side, P. sat with Wesley, Wesley’s girlfriend and another member of the family.

The jury found Anna guilty on both counts. D.J. was incapable of giving his consent, and Anna’s faith in D.J.’s typing — learned from her mother, sustained through academic conferences, reaffirmed by friends and colleagues — could not excuse her. In the language of moral philosophy, she was, at best, ‘‘culpably ignorant,’’ lost in a fog of good intentions.

Anna sat in silence as her lawyers argued for continuation of her $100,000 bail. When the judge explained that Anna had been convicted of two counts of a first-­degree felony and that further bail would be impossible, she collapsed onto the defence table in loud, convulsive sobs. ‘‘Please,’’ she begged, ‘‘what about my daughter?’’

‘‘I truly feel for what is a very difficult situation,’’ the judge said quietly. But Anna would be facing 10 to 20 years for each of the two times that she and D.J. had sex. The prosecutor had asked for the punishments to run consecutively. Anna, whose sentencing is scheduled for Nov. 9, could end up in the Edna Mahan Correctional Facility for Women for up to 40 years.

Though Anna’s father says that she had been training in jujitsu to be able to defend herself in prison, she seemed optimistic to the end, planning out the life she would lead with D.J. after she was found not guilty, after he was freed from P. and Wesley and after they at last could marry. ‘‘We would have welcomed him with open arms into our family,’’ Anna’s brother said.

Just before 11 a.m., the bailiff lifted Anna from her seat and cuffed her hands behind her back. As she stood, she tried to speak, but her body shook and her throat closed up amid the sobs. The word ‘‘justice’’ could be heard, but nothing more.

Daniel Engber is a frequent contributor to the magazine and a contributing editor for Slate and Popular Science. His last feature was about the quest for a natural sugar substitute.

 

New York Times, 20th October 2015

`EAC has 18 million disabled people`

There are about 18 million people with disabilities in the East African Community, President Uhuru Kenyatta has told a conference in Kenya’s capital, Nairobi.

In a speech read on his behalf by Labour Cabinet Secretary Kazungu Kambi over the weekend, the president said that such persons are largely to be found among the poorest strata in society.

“It is estimated that on average, less than 2 per cent of persons with disability in Africa enjoy primary school education and that there are no real opportunities for rehabilitation.”

As a consequence, the president said, people with disabilities are invariably marginalized and excluded from both the formal and informal job markets. At the same time, he added, women with disabilities are particularly vulnerable to gender based violence.

President Kenyatta further said that the EAC had placed the issue of empowering persons with disabilities high on the integration agenda.

“This conference underpins the critical role that partner states and governments must play in providing leadership through the establishment at national levels of enabling environments to allow for people with disabilities to contribute as effective and full participating members of societies.”

In his own speech, Kambi told the two-day conference that Kenya was among nations that had ratified the United Nations Convention on the Rights of Persons with Disabilities.

“A wide range of legislative harmonization, policy frameworks, intervention programmes and social processes have been and continue to be put in place to ensure that persons with disability receive appropriate health care, educational and rehabilitative services within environments that best suit them.”

The Second EAC Conference on Persons with Disabilities was also addressed by Kenya’s Principal Secretary for East African Affairs, Mwanamaka Mabruki, who said that the global post-2015 partnership will be based on shared responsibilities that include guaranteeing the rights of persons with disabilities to benefit from economic and social development and participate fully in it.

“Upholding the rights of persons with disabilities must be seen as a priority for national and regional policies and should aim at guaranteeing equal access to social services and to job markets for all, Mabruki said.

The overall objective of the conference is to ensure that the disability concerns are mainstreamed in laws and policies at both the regional and national levels.

The theme of the conference is, “Empowerment: The disability concern in the EAC regional integration agenda.” Participants are drawn from politicians, academicians and civil society, among others, from all the partner states.

Specifically, the conference aims to review the existing national employment policies on how they cater for empowerment of disabled persons; assess how far the partner states have gone with the implementation of the UN Convention of the rights of persons with disabilities; and assess how the partner states have attained the Millennium Development Goals in relation to people with disability and participation in the post-2015 agenda.

The meeting will further explore opportunities for ensuring accessibility for and inclusion of persons with disabilities in all aspects of development and giving due consideration to all persons with disabilities in the emerging post-2015 United Nations development agenda.

In addition, the meeting will be expected to assess the adoption of rights for people with disabilities as indicated in Agenda 2063 by the partner states; devise means on how people with disability can be empowered in relation to Agenda 2063; and assess the extent to which the disability concern has been mainstreamed in policies, strategies and practice at national and regional levels.

The EAC policy on persons with disability is based on the provisions of Article 120 (c) of the Treaty for the Establishment of the East African Community, under which the partner states undertook to closely co-operate among themselves in the field of social welfare.

This is with respect to, among others, the development and adoption of a common approach towards disadvantaged and marginalized groups, including children, the youth, the elderly, and persons with disabilities through rehabilitation and provision of, among others, foster homes, healthcare, education and training.

SOURCE: GUARDIAN ON SUNDAY

An uphill struggle for securing rights of the disabled

Akhil Paul

Being a member of the erstwhile drafting committee for the Rights of People with Disabilities Bill 2012, I can testify to its stand that ‘it cannot be made perfect as every process involves breaking something else’. That was our guiding principle while drafting the Bill — one that was been jinxed from the beginning given the ups and downs with regard to opinions about it within the sector.

Civil society — which includes the government, activists and NGOs — has once again shown its insensitivities with regard to the Rights of People with Disabilities Bill 2014. The Cabinet-approved Bill lacks on many counts, but most so on ‘non-negotiable provisions’, the reason it has invited heavy fire from various disability groups. One group is of the opinion that it is disjointed and needs serious reworking before it can be enacted. The other standpoint is that the Bill may not be perfect but at least it recognises and provides something to those people with disabilities (autism, deaf-blindness, intellectual disabilities, mental illness etc) who are not included in the 1995 Act.

It is important to highlight that while the Cabinet-approved version Bill of 2014 has changed the definition of disabilities, other provisions — which need to be incorporated in the Bill to ensure that the newly recognised persons with disabilities obtain all the entitlements (including job reservations) — have not been included. Without those provisions being included, the expanded definition is going to be of little benefit.

The needs of people with these newly recognised disabilities are very diverse and individual-specific. Hence, ‘reasonable accommodation’ would have been the tool to ensure that they get what they want. The denial of reasonable accommodation needs to be recognised as discrimination. This provision was needed because unlike accessibility, which pertains to disabled-friendly features in built environment, goods and services, transport and communication, reasonable accommodation deals with the needs of individual persons with disabilities — be it a particular kind of work, equipment, furniture or flexibility of time and workplace. Whilst the proposed Bill of 2012 had this provision as a right, the Bill of 2014 only places an obligation on the appropriate government to ensure reasonable accommodation.

The non-recognition of the right to legal capacity and reasonable accommodation in the Bill of 2014 is exacerbated by the fact that the new law does not overrule existing disqualifications in other laws. Instead, it states that the provision of the law will be in addition to and not in supersession of existing laws. This means that all the existing laws by which persons with disabilities are disqualified from exercising their rights to contract would survive. In the face of those provisions, it would be difficult for the freshly included persons with disabilities to avail their new work and livelihood entitlements.

I have come to the conclusion that the Cabinet-approved version is going to hit the newly recognised conditions of autism, deaf-blindness, intellectual disabilities and multiple disabilities very severely. Though they will be recognised and included in the Act, they will not have any guaranteed right to education, employment or legal capacity, and every entitlement will have to be contested in the court of law.

There are many like me in the disability sector who have started to prepare for the long haul, because with the Bill not coming through, more advocacy and campaigning will be needed. If the Bill is persisted with in its current form, we will have to work on ensuring a non-negotiable foundation. And if it is not, we will have to restart the drafting process, this time hoping for more ironclad provisions.

The author is Founder Director of Sense International (India), an organization working to support the development of sustainable services for deaf-blind people throughout the country