Living with Dignity

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Today, December 3rd, is the International Day of People with Disability. It is an annual event designed to “increase public awareness, understanding and acceptance of people with disability and celebrate their achievements and contributions.” Each year there is a specific theme, and this year, quite appropriately, it is “Building Back Better: toward a disability-inclusive, accessible and sustainable post COVID-19 World.

This year has been challenging for everyone. COVID-19 has disrupted our lives, introduced us to social distancing and lockdowns, and shaken our economies to the core. It has also had a significant impact on our own mental wellbeing as we have experienced prolonged periods of isolation and anxiety. In some ways, it has enabled people without disabilities to experience the isolation and alienation that is often the every day experience of many people with disabilities.

To highlight the importance of celebrating and supporting people with disabilities, the ABC has been featuring and promoting the stories of Australians with disabilities. The people featured come from all walks of life and have a range of disabilities, highlighting the fact that every person with a disability is unique. Katrina, Oliver and Dale are just a few of the people with disabilities whose stories are featured.  

Sometimes there can be a tendency to see people with disabilities as a source of inspiration. There is no doubt that their stories can be inspiring, but mostly,  people with disabilities are just trying to get on living their lives the best way they can, like all of us. But there is a dark side to life with a disability too.

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In April last year, the Australian Government established a Royal Commission to investigate the neglect and abuse of people with disabilities. The Disability Royal Commission has revealed shocking stories of abuse and neglect. People with disabilities can be vulnerable to exploitation and abuse, especially if they have an intellectual impairment, are nonverbal or are limited physically. Even more so when they are isolated and alienated from the usual support networks. Eventually there will be a list of recommendations that will hopefully address these issues and suggest strategies that will help prevent the kind of systemic abuse that has been allowed to endure.

Stories of Neglect and Abuse

Not long into our national Covid 19 lockdown, there were three stories of abuse and neglect that made headlines. These stories shocked and sickened us all and demonstrated why the Royal Commission was essential and why days like the International Day of People with Disability are so important. 

 In May two teenaged boys with autism were found locked in a room and living in squalid conditions. The boys were so malnourished that neighbours thought they were of Primary School age. They were actually aged 17 and 19. Apparently, neighbours had tried to seek help for them but were told by authorities that there was nothing they could do. Seriously? 

Around the same time, the death of a four year old girl with Down syndrome was reported. She too had been a victim of neglect and abuse. The chief officer from Children and Young People with Disability Australia (CYDA) said:

The abuse and neglect of children and young people with disability cannot be tolerated. Every child has a right to feel safe, secure and loved.

Just a month prior, a woman with cerebral palsy died as a direct result of being left in a cane chair –  for a year. It was reported that she suffered from profound sceptic shock, multiple organ failure and malnutrition. Police reported that she had been living in “disgusting and degrading conditions” for at least a year before her death. She did not live alone. She had a carer, who is now facing charges. The story continued to make headlines as further abuses were revealed. This case was particularly shocking, especially to families caring for a person with a disability, because her parents, who are deceased, had done everything they could to provide for her needs. They had bought her a house in a nice area. They had left her a large inheritance to provide for her daily needs. Where was the oversight? 

Sadly these cases are not unique. 

 As disability rights activist, Samantha O’Connor, said: “We know this happens to disabled people every day…

We don’t always know the full story but still, these were vulnerable people who deserved to be treated with dignity, who deserved to be loved and supported. Dignity is not just an optional privilege for the wealthy or the abled. It is a fundamental human right for every individual who lives on this planet.

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The Universal Declaration of Human Rights includes the following statements.

  • All human beings are born free and equal in dignity and rights.
  • Everyone is entitled to all the rights and freedoms set forth in this Declaration without distinction of any kind
  • Everyone has the right to life, liberty and the security of person.
  • No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment.
  • Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits.

As a parent of a young man with a disability, these stories chilled me to the bone. It is our worst nightmare. That one day, when we are no longer around, our child will be exploited, neglected or even abused. Who will be checking to see that our child is ok, that he is being taken care of, has good health, is well fed, and living a happy life?

In our case, Dan has a sister, Bec, but that is a huge responsibility to lay on just one person. That is why Future Planning is absolutely essential. Future Planning involves setting up a strong support network of people committed to the care and wellbeing of Dan, now and in the future. When we are no longer around, this circle of support will step in to ensure Dan is happy and well cared for. Bec will be an important part of this circle, but she won’t be alone. In a way, we could envision the circle of support as a mechanism to support both Dan and Bec when we are no longer here. 

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Another important aspect of Future Planning is to develop a clear vision of Dan’s future life. Natalie Wade, a lawyer, advises families to “ dream big…and really think hard about what a good life will look like.” There is a whole lot of information about Dan and my vision for his life which is stored in my head. Fortunately, there are some excellent resources available for families to help them in the process of documenting their future vision. Here in Queensland we have been able to attend free workshops with Disability Law Queensland, who provide excellent and more importantly, accurate advice for families wanting to ensure the best future for their children with disabilities.

We would all like to think that the stories revealed in the Royal Commission and reported in the papers would one day be a rare occurrence. Preferably even non existent. It takes a whole community to ensure that becomes a reality. You might not be caring for a person with a disability but maybe you have a work colleague with a disability or a neighbour. Maybe one day you may be invited to become a member of a support network for a person with a disability. The International Day of People with Disability, then, is not just for people with disabilities but for all of us as we strive together to create a disability-inclusive, accessible and sustainable world. 

3 thoughts on “Living with Dignity

  1. This is a great post Karen. I have noticed there is room for improvement in how we respond to students and staff with disability. Trying to learn more, at least we can start from a position of respect and empathy and go from there. The ABC coverage this week has been insightful and in some cases surprising and disturbing.
    You have illustrated why a family network is so important but also a big responsibility.

    Liked by 2 people

    • Thanks Sharon. I think one of the biggest issues is when people make assumptions, as demonstrated in some of the stories on the ABC. People have often made assumptions about Dan because he is non-verbal – he is a lot more capable than some people give him credit. You’re right, though, about starting with respect, empathy and a willingness to listen and learn.

      Like

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