Letter In The World #4

Jane Sloane-Front Yard
I’m currently back in Australia, having a few precious days at my cottage in Piccadilly and time with my family and friends.

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An informed and active citizen movement in Australia is what has moved the National Disability Insurance Scheme (NDIS) from being a great idea to an almost certain reality.  There’s been a groundswell of support for this insurance for a long time now, with many Australians agitating for action to make it happen.  The promise of a Federal election in the next few months was the Australian community’s ace card to get it across the line.  Every politician, parliamentarian and future Prime Minister wants the popular vote and this legislation will win favor with many Australians. With the proposal to pass laws for a 0.5 percentage point increase to the Medicare levy to partially pay for the scheme the legislation will be introduced in the next fortnight. About 410,000 people with disabilities around the country are likely to receive lifelong support from the insurance scheme.

Aside from the human rights argument, the intention of the NDIS is to increase the economic and social participation, and therefore productivity, of Australians who have a severe disability. According to John Della Bosca, national campaign director for Every Australian Counts, the NDIS Advocacy campaign Australia has one of the lowest rates of employment participation in the OECD for people with disabilities, despite Australia being an affluent country.  Consequently, 45 per cent of people with a disability live in, or near, poverty as compared to the OECD average of 22 per cent.

With an NDIS in place it will mean that those Australians with a disability will have access to the equipment or support they need to increase the quality of their life.  Australians with a disability will no longer be left for extended periods in acute hospital beds as they’ll be able to access support in the community at a fraction of the cost. Children with disabilities will gain access to early intervention to maximize their development and capacity for independent living. The NDIS will double the skilled workforce providing services to people with severe disability.

Pricewaterhouse Coopers found that, with NDIS support, increased employment participation by people with disability would be an additional 370,000 people by 2050. Families and the economy would benefit from increased employment participation, with 80,000 family carers entering the workforce or increasing the hours worked, resulting in a fiscal gain of $1.5 billion in GDP a year.

As Della Bosca says, for the first time people with disabilities and their families will become a large, informed consumer market able to pay for a variety of reasonably-priced goods and services to support their lives. In the US, Fifth Quadrant Analytics’ report The Global Economics of Disability 2012 describes the global market of 1.1 billion people with disabilities as an emerging market the size of China, with friends and family, whose lives they directly affect, adding another 1.9 billion potential consumers.

For many years we’ve expected a family to carry the cost of someone’s disability rather than the broader community sharing this cost and the load.  Now this will be a shared load by all Australians and, as a result, we’ll likely see a more active Australian community of people with disabilities as they claim their place in the workforce and in the broader social and cultural life of this nation. One would hope that what might emerge from this greater engagement and embrace is a country of increased compassion, connectivity, community and grace.

One can only hope that in the US a future President possessing similar vision and determination to President Obama might go the next round and see a similar kind of disability insurance program operational in America.

My evening meditation over the last few months in Sausalito is to run a bath, tip in French lavender oil and sink in with a copy of Andrew Solomon’s profoundly moving (700+ page) book, Far From the Tree: Parents, Children and the Search for Identity (in the new edition, the subtitle is A Dozen Kinds of Love).

Solomon interviewed over 300 families over a ten year period to learn how they coped with a child who was different in some way, due to disability or different ability and to understand more about illness, identity and difference.  As he says,

‘The children I describe here have horizontal conditions that are alien to their parents. They are deaf or dwarfs; they have Down syndrome, autism, schizophrenia, or multiple severe disabilities; they are prodigies; they are people conceived in rape or who commit crimes; they are transgender. The timeworn adage says that the apple doesn’t fall far from the tree, meaning that a child resembles his or her parents; these children are apples that have fallen elsewhere—some a couple of orchards away, some on the other side of the world. Yet myriad families learn to tolerate, accept, and finally celebrate children who are not what they originally had in mind. ‘

‘Broadcasting these parents’ learned happiness is vital to sustaining identities that are now vulnerable to eradication. Their stories point a way for all of us to expand our definitions of the human family. It’s important to know how autistic people feel about autism, or dwarfs about dwarfism. Self-acceptance is part of the ideal, but without familial and societal acceptance, it cannot ameliorate the relentless injustices to which many horizontal identity groups are subject and will not bring about adequate reform. We live in xenophobic times, when legislation with majority support abrogates the rights of women, LGBT people, illegal immigrants, and the poor. Despite this crisis in empathy, compassion thrives at home, and most of the parents I have profiled love across the divide. Understanding how they came to think well of their own children may give the rest of us motive and insight to do the same. To look deep into your child’s eyes and see in him (her) both yourself and something utterly strange, and then to develop a zealous attachment to every aspect of him (her), is to achieve parenthood’s self-regarding, yet unselfish, abandon. It is astonishing how often such mutuality has been realized—how frequently parents who had supposed that they couldn’t care for an exceptional child discover that they can. The parental predisposition to love prevails in the most harrowing of circumstances. There is more imagination in the world than one might think.’

In his introduction, Solomon includes a quote from the writer, Clara Claiborne Park who said in the 1970s of her autistic daughter,

“I write now what 15 years past I would still not have thought possible to write: that if today I were given the choice to accept the experience, with everything that it entails, or to refuse the bitter largesse, I would have to stretch out my hands—because out of it has come, for all of us, an unimagined life. And I will not change the last word of the story. It is still love.”

One of Solomon’s ten chapters is on those who are deaf and the countercultures it creates. His writing and insights from his own experiences with the deaf community challenged me to think about what I would do if I had a child who was born deaf and whether I would make similar decisions to some of those parents whose stories we read.  Such as whether I would ensure my child had cochlear implants at an early age so that they could feel and be as ‘normal’ as possible or instead allow them to be absorbed in a world of Sign that I could only partially embrace in order that my child feel totally connected with a rich community of those who are deaf, some of whom hold fiercely to the unique experiences they have by being deaf. Solomon observes:

“Communicating in Sign is more meaningful to many deaf people than being unable to hear. Those who sign love their language, often even if they have access to the languages of the hearing world. The writer Lennard Davis, a “child of deaf adults” (CODA) who teaches disability studies, wrote, “To this day if I sign ‘milk,’ I feel more milky than if I say the word. Signing is like speech set to dance. There is a constant pas de deux between the fingers and the face. Those who do not know sign language can only see the movements as distant and unnuanced. But those who understand signing can see the finest shade of meaning in a gesture.”

Solomon goes on to describe his experience of being present at a national convention for the deaf:

‘Shortly after Lexington’s graduation in 1994, I attended the NAD (National Association of the Deaf) convention in Knoxville, Tennessee, with almost two thousand deaf participants. During the Lexington protests, I had visited deaf households. I had learned how deaf telecommunications work; I had met dogs who understood Sign; I had discussed mainstreaming and oralism and the integrity of visual language; I had become accustomed to doorbells that flashed lights instead of ringing. I had observed differences between British and American Deaf culture. I had stayed in a dorm at Gallaudet. Yet I was unprepared for the Deaf world of the NAD.’

‘The NAD has been at the center of Deaf self-realization and power since it was founded in 1880, and the convention is where the most committed Deaf gather for political focus and social exchange. At the President’s Reception, the lights were turned up high because deaf people lapse into speechlessness in semidarkness. Across the room, it seemed almost as though some strange human sea were breaking into waves and glinting in the light, as thousands of hands moved at stunning speed, describing a spatial grammar with sharply individual voices and accents. The crowd was nearly silent; you heard the claps that are part of the language, the clicks and puffing noises that the deaf make when they sign, and occasionally their big, uncontrolled laughter. Deaf people touch each other more than the hearing, but I had to be careful of the difference between a friendly and a forward embrace. I had to be careful of everything because I knew none of the etiquette of these new circumstances.’

Thinking about this world of the deaf and disability and difference made me also look to the human rights work on disability that the Global Fund for Women supports.  In so many developing countries, women with disabilities are struggling to stay alive and the idea of a government funded disability insurance program would seem like a distant dream.  So too the kinds of conversations and decisions that parents featured in Solomon’s book are able to make regarding the care and choices of people with disabilities, or people who are experiencing profound difference in some way.  Women and their families and children are barely surviving rather than having any choices to support them thriving.   Many people with disabilities live out their lives in institutions or in conditions akin to a Dickensian tale.

In developing countries, women with disabilities are two to three times more likely to suffer physical and sexual abuse than women without disabilities.  A staggering 98 percent of children with disabilities do not attend schools, and girls with disabilities are less likely to attend school than boys with disabilities.

Globally, over 20 million women a year become disabled as a consequence of unsafe conditions surrounding pregnancy and childbirth. According to a Fiji Women’s Crisis Centre report, over 40 percent of women in Fiji are battered while pregnant. This increases the possibility of women and children becoming disabled due to complications during childbirth. A 2009 UNDP pacific Centre Report titled Pacific Sisters with Disabilities – at the intersection of discrimination by Daniel Stubbs and Sainimili Tawake reported that women with disabilities may experience forced sterilization and forced abortion due to discriminatory attitudes about their capacity and denial of information about sexual, reproductive health and contraceptives.

To address the discrimination experienced by women with disabilities, over the last two decades, the Global Fund for Women has provided over $1.6 million in grants to 114 grassroots organizations in 61 countries led by women with disabilities.  Many women with disabilities face multiple layers of discrimination as they work both to ensure that the human rights of those who have a disability are protected and that women’s rights are ensured within the disability community.

Some of the organizations supported by the Global Fund have included Hayot, the first organization in Samarkand, Uzbekistan established by and for women with disabilities believes that the “the moral health of a society is determined by its attitude towards people with disabilities. Meliya Asanova, the founder said “Hayot received their first grant from the Global Fund in our second year of operation, when our annual operating budget was just $8,000. Today, Hayot’s annual budget exceeds $200,000 and includes a diverse group of funders. Hayot is a key resource center in the region, providing legal literacy classes, counseling, campaigns for accessible buildings, advocacy on behalf of disabled women’s rights, and assistance to new organizations as they establish themselves.

Global Fund grants have also been provided to women’s rights organizations in order to conduct legislative advocacy and change the laws to ensure protection of the rights of those with disabilities. These organizations have included Shumuu Association for Human Rights and Care for the Disabled in Cairo, Zambia National Association of Disabled Women, and the Georgian Disabled Women’s International Association. In Kenya, the Kenya Association for Empowerment of Disabled People monitors the implementation of the People with Disabilities Act and other parliamentary bills to ensure there are no clauses that discriminate against women with disabilities.  The Association works to ensure that critical information such as on HIV/AIDS prevention can be made available in formats accessible to all people.

In Gaza, the Bureij Association for the Rehabilitation of the Handicapped, the only organization of its kind is led by, and works with, women and girls with disabilities in the Bureij Refugee camp. The Association’s week-long health education and disabilities seminars have engaged over 100 women and 80 young women with disabilities and their mothers have participated in the Association’s first aid, general education, homeopathic medicine, and sign language workshops.

Jane Sloane - Cottage

A world away, here in Piccadilly in the Adelaide Hills, I step out onto my balcony and tilt my head to the Milky Way.

My loft bedroom is near to the tree. A tree whose branches I can almost reach from my balcony and where I can sometimes spot koalas sleeping.  A tree that represents the constancy of my connection to home and a place in the world.

 

We are not human beings having a spiritual experience. We are spiritual beings having a human experience. ~Pierre Teilhard de Chardin

Jane Sloane – Piccadilly