A Fulfilled Life
Welcome to Holland is a poem written by Emily Perl Kingsley about how having a baby can be compared with planning a trip to Italy. “You buy a bunch of guidebooks and make your wonderful plans,” but the flight plan suddenly changes when you have a child with a disability. Instead of going to Italy, like everyone else, you land in Holland. “So you must go out and buy a new guidebook” and prepare for a life that you didn’t plan but a life that can be just as exciting and fulfilling, still full of dreams and ambitions. “If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”
The unexpected challenges associated with having a child with a disability can have a life changing impact on parents; however, unfortunately, we are part of a society where children with a disability and their parents are not adequately supported. One example of the insufficient support can be understood through the added expenses associated with having a child with a disability. A study undertaken at the University of Sydney highlighted that on average, a family who cares for a child with a mild disability has to cover approximately $73,000 each year more than a family who doesn’t have a child with a disability. This figure increases to $116,000 if the child has a more severe or profound disability.
Facing the significant challenges associated with having a child with a disability is the reality for more than a few families. By 2012 in Australia, there were 53,428 children under the age of 16 diagnosed with Autism Spectrum Disorder. That is, 53,428 children who have families in need of extra support; 53,428 children whose families are not being adequately catered for by society. And that figure is only taking into account those children diagnosed with Autism, just only one of the many common complex disabilities prevalent in today’s society. It is estimated that there are approximately 750,000 people of all ages who satisfy the criteria for disability care funding; 750,000 people who require assistance and support to live their lives and to achieve their dreams and ambitions.
On the 12th of September 2014, Rafael Epstein on ABC radio read out a letter from a man named ‘Juzz’ about his role as a disability support worker. Juzz explained that the people he cares for “are pretty much told how their lives will be and each day depends entirely on who their support worker is and what their support worker thinks is important or right.” He continued, “they don’t get to choose who will be caring for them each day, they don’t get to choose where or who they live with, they don’t get to choose how they spend their day, when they get up in the morning, when they have their meals, what they will wear each day.” Juzz raised the pressing issue that many people with a disability are not accorded adequate dignity and respect to make their own choices in life.
It is a fundamental concern that as we strive to create an egalitarian society there are those who are not accorded the basic human right to live with dignity and to make choices about how they wish to live their lives. If Albert Camus argued that “life is a sum of all your choices,” what then for those, who are not granted an opportunity to choose? What then for the rest of us who live in a society where so many are not accorded equal opportunity to make decisions?
Unfortunately, for a child who is diagnosed with a disability, society’s destruction of choice begins from an early age. Children with a disability grow up alongside typically developing children, yet their paths quickly diverge. If they are lucky enough for a mainstream school to accept them and their accompanying challenges, then they still may not be lucky enough to be accepted on school camps, or they may not be provided with the opportunity to have a main part in the school play. The child may need extra support. Maybe even a lot of extra support. Many schools don’t take a chance, why would they, when the child may have a meltdown on a hike, or start crying and run off stage. After all, every child deserves to have a good time. Every child. So why would the school let one child put the enjoyment of all others in jeopardy.
Through missing out on experiences like attending school camps or being in plays, as well as many other experiences that may be missed out on by a child with a disability, there are two outcomes: Firstly, the child is taught that they are different, isolated, unequal and undeserving. And secondly, all the other children are taught that the child is different, isolated, unequal and therefore undeserving. The schools that adopt this restrictive attitude eliminate all hope of the child being treated as an equal in society by lowering his expectations of how he feels he should be treated and by destroying any hope of the other children, the future community leaders, business owners, lawyers, doctors and teachers, of treating anyone with a disability as an equal participating and contributing member of society with hopes and dreams.
It is through experiences like these that school children develop a stigma towards people with a disability. This perception is a damning reflection on society and it is this perceived inability to participate, rather then the individual’s actual ability, that renders the individual incapable of making any decision for themselves later in life.
This is not the case for every child; many are given every opportunity to engage in school as equals, and those who are, will reap the benefits of the caring teachers and peers for the rest of their lives. The rest of society needs to learn from these teachers as they provide a framework where children with a disability can thrive, and where their peers learn to be supportive and inclusive. It is abundantly obvious that these environments are the breeding ground for a positive society that understands that through encouragement anyone can thrive, and through discouragement everyone will fall.
Jewish philosopher Samuel Ullman wrote, “whether they are sixteen or seventy, there is in every being’s heart the love of wonder, the sweet amazement at the stars and starlike things and thoughts, the undaunted challenge of events, the unfailing childlike appetite for what is to come next, and the joy and the game of life.” Every individual has dreams of living a fulfilled life, and every individual must be provided with a framework from which they are accorded sufficient dignity and are encouraged to pursue these ambitions.
There is little contemporary Jewish philosophy on the topic of the rights of people with a disability. Rabbi Tzvi Marx is one who addresses this pertinent topic in his book Disability and Jewish Law through using a Jewish lens to analyse attitudes towards the support and inclusion of people with a disability. Rabbi Marx describes Moshe Rabbeinu and his speech impediment as impacting on his ability to communicate and therefore to lead, “I am not a man of many words…for I am slow of speech and of a slow tongue” (Exodus, 4:10). Moshe doesn’t appear to be capable of assuming the leadership of the Jewish people, so Moshe’s brother Aaron is employed as Moshe’s advisor, spokesperson and ultimately as a leader of the Jewish people in his own right. As God said to Moshe, “Aaron shall be your prophet” (Exodus, 7:1). Aaron was chosen to support Moshe in achieving his potential. Without his support and guidance, Moshe, arguably the most important leader in Jewish history would have never have led the Jewish people to freedom.
Rabbi Marx states in reference to the idea of Aaron as Moshe’s right hand man:
“Bolstering the disabled individual’s freedom to take responsibility is a way of giving him dignity in a culture where dignity is a function of this capacity. Can it ever be justifiable, on compassionate grounds, to demand less? Can it be fair not to enable any member of society to maximise his potential just because including him would involve greater expenditure and special social efforts than to exempt him? It is within the context of the collective taking-on of the covenant that the community must address the fact that a segment of the population – the disabled – is marginalized.
Responsibility imposes upon others the mandate of assisting the disabled to realize their potential, without at the same time diminishing their self-esteem.”
Just as Aaron’s support for Moshe is a shining light for how society should work with people with a disability, so to is Australian society today taking up the challenge. The winds are changing.
The most notable example of society’s improvement is the National Disability Insurance Scheme (NDIS), which has garnered support over the past 12 months. Briefly, the NDIS is a restructuring of the funding systems allocated to people with a disability whereby the individuals and their families will receive funding directly, as opposed to the previous system of funding services.
This new insurance scheme is designed to ensure the financial viability of providing support for people with a disability into the future, the ultimate premise of which is to provide choice for service users. By allocating funding directly to individuals, they are able to make a choice about which service they wish to access.
It is a brilliant start to the conversation of funding support for individuals to achieve their goals and to live meaningful lives through providing the opportunity for people with a disability to choose. Perhaps more importantly, the NDIS has placed disability care at the centre of the government’s agenda and of the public psyche.
If the NDIS is to work, it must be underpinned by social cooperation and a community commitment to provide services that people with a disability can choose to use. We need to work as a community to present new opportunities to people with a disability so that they can use their newfound freedom, gifted by the NDIS, to choose services and supports that can enhance their lives.
Through engaging in the development of new innovative responses to the challenges that exist for people with a disability, we can begin to counteract the pernicious attitudes developed overtime through schools and institutions that have previously been incapable or unwilling to engage in supporting people with a disability. Through the NDIS, the government is laying the foundation for change; a foundation that we, as a society, must build on. If we do this, parents who have a child born with a disability will no longer need to fear the ‘new flight plan’ because as a society we will be united in our pursuit to support these families and to facilitate equal opportunities for them and their children.
Over the past 12 months I have been privileged to work as the Chairperson of Camp Sababa Melbourne, to develop an organisation that supports young people with a disability. In the coming months we will run our first camp for 20 campers with a disability and 40 year-12 volunteers from Melbourne’s Jewish schools. The year-12 students have spent time this year learning about disabilities and preparing themselves to support the campers on the 4 day camp. The ultimate aim of working with the year 12 students is to develop a network of young passionate leaders who can learn from Aaron and Moshe in order to drive the Jewish community forward in the pursuit of supporting people with a disability in all areas of their lives. Camp Sababa Melbourne is taking up the challenge as we seek to champion respect and dignity for young people with a disability.