The dignity of risk for the disabled

Individuality and social inclusion for my future my choice

My dilemmas and my conquests have increased my conviction that somehow we-all of us-need to find a way to view and support people with disabilities in proactive and caring ways. Taking equal opportunity as an overarching principle for a way of life that is flexible enough to assist diverse disablement in diverse ways. We need simply to face up to people with severe disabilities as people. We need a flexible and empathetic approach, aligned to an appreciation of the diverse social abilities, responsibilities and opportunities that become evident when people interact with each other as fellows, as equals.

The medical and social model models of disability

Today disability is studied in two ways. The first is the medical model of disability, which looks at disability as a medical illness that either has to be medically cured at an individual level, or controlled to allow the person with a disability to become a normal functioning member of society. Secondly, there is the social model of disability that understands disability to be the outcome of social, political and economic processes, which have an impact on the lives of people identified as disabled, as well as on the lives of people who are not identified as disabled.

Whereas the medical model focuses on the individual as a "patient" by contrast, the social model focuses on the infinite social processes and dynamics of disability. The social model is empathetic to the view that disability discrimination and prejudice is made stronger by a lack of accessible and socially and economically rewarding information, technology, architecture and events.

The antiquated view of the medical model has created persistent stenotypes and resultant stigma about "people with disabilities". The medical model believes that "people with disabilities" may never attain acceptable social norms without a complete cure. This leaves those that cannot be cured, with an impossible dilemma, which leads to the social, economic, political and cultural marginalization of many "people with disabilities". While the care/support given to people with disabilities has increased over recent years I'm concerned by the trend towards standardising disability services. In order to realise the infinite possibilities of individuals with a disability, support must be provided on an individual basis

My own experience reveals the failure of the medical model of disability. For others and me it has been a source of stigma and discrimination. For example, I have been pitied, conveniently verbally misunderstood, looked down on for my supposed abnormal structure and characteristics, and characterised as a loser.

The social model of disability by contrast challenges this stigma and discrimination. The social model has the potential to roll back societal prejudice and misguidance and support "People with disabilities" to attempt and possibly achieve their goals free of harassment stereotypes and discrimination.

I believe, the social exclusion of people with disabilities occurs because most people are still operating from the medical model of disability. They have not been exposed to the social model of disability. My successful completion of a PhD is proof of the veracity of social model of disability

Dignity of risk should be a disability right

There is a concept called 'dignity of risk'. This refers the right of everyone to pursue activities that have a level of risk, for example, going swimming or surfing. However, the risk can be managed by, in this case, checking the conditions before going, and going with a friend. So does this mean that a service provider or carer of someone with a disability has to balance the risk to the disabled person and the right of that person to pursue happiness for them? People with disabilities are usually in the best position to instruct their own support services. Dignity of risk should mean that support services encourage the disabled to make their own informed choices.

Stereotyping and discriminatory attitudes can make it even more difficult for a person with disabilities to be a 'normal person'. It follows that the disabled person should decide for him or herself what their own 'dignity of risk' level is. Recognition of this need will facilitate a better relationship between the support workers and the disabled.

The danger is that the principle dignity of risk is something that can be over-ridden-and the disabled persons' support turned into a legal tug of war. Sometimes people with a disability are prevented from making certain decisions or participating in activities because other people judge these to be too risky. How risk is perceived is unique to us as individuals and management of risk should be tailored to a person's individual circumstances.

Standardising and the need for an individualised approach

For example, when I lived in my own place, I used a sling. When I moved into Shared Supported Accommodation two years ago I was told that it did not meet the standards of the House. It was explained to me that another person using this sling had died; it was deemed unsafe for that person therefore it was unsafe full stop. But I had successfully used the sling for fifteen years.

I'm concerned that disability services needs to avoid processes, which standardise disabilities. Each person needs to be understood and respected in his or her own terms. I have had 15 years experience with my sling and I should have been allowed to demonstrate its features, to emphasize how it posed no great risk for me.

I could enter this house only after a total rearrangement of most of my equipment, which I have been using for many years. And all of a sudden, the equipment I had used was dispensed with because it apparently did not meet the safety standards of the new house. Standard procedure is one thing; care in supporting those with disability ought not be neglected. But this aspect of my move have cost me a lot of money and caused emotional turmoil.

Sure, cause of very slurred speech, I have difficulties communicating with management, but they should reckon with me as someone who is qualified (I do have a PhD and have studied sociology, economics and management). And if they are not taking my opinions into consideration, then they should know they are making me feel as if I am a person with a cognitive disability. I am very supportive and sympathetic of many clients in this house who have cognitive disabilities, but I am not one. I am also supportive and sympathetic of the workers. They need to be encouraged to take the views of clients – in this case like myself – into account.

The potential of synergy as a way forward for the disability sector

Consider the dynamics of mutually beneficial partnerships between attendant carers and the people they care for, people who, rather than being merely disabled should be viewed as those with many different abilities. This exploration considers some pragmatic examples, which encourage the participation of these people in contributing to a more inclusive society.

The underlying goal of mutually beneficial partnerships is to chart the further education of those directly and indirectly related to disability work. The aim is to identify the pathways that are courteous, mutually beneficial and helpful. The pathway needs to be identified so that by travelling it together, both parties can truly share life together. The potential benefits for developing such mutually beneficial partnerships are substantial. The flow-on will be to all those in society who are indirectly and directly related to disability. For example, there is an unlimited possibility for the transference of abilities, which will create a new potential for people with different abilities and support workers in a dynamic, merit-based society.

The synergistic outcomes that can flow from this form of flexible support can be demonstrated through my own (unpaid) work output. Synergy is a term that is popular in most Human Resource Management departments. Simply defined it means that the whole is greater than the sum of its parts, i.e., 1+1=3. In my case the synergistic partnership between my support worker and me allows me to flourish in my role as a disability activist

For example, the synergy that is provided to me through the intervention of flexible disability support provides me with the means to achieve many of my goals in life. This approach to personal care is cohesive and flexible and humane. It allows me to manage the complexities of my life and desires. It helps me to attain my full human potential when and where my bodily abilities are lacking. For example, my progressive illness creates a deterioration of motor skills, which leaves all my physical attributes severely disabled. However, I am still able to perform research and write articles at a significant rate beyond that of many paid workers in the disability sector. Basically my performance is created through the synergy gained mainly through the work of my support worker.

This synergy explains the transformation that takes place in people with such different abilities and support workers, where the mutual benefits that occur will provide for a more proficient and humanly thoughtful disability sector, providing for a more inclusive society. Synergy becomes a fundamentally conscious event, which motivates, transforms and unifies all of life with a concerted and organised combination of such people of different abilities and support workers-this then, in my view, is the path to unify and enhance the disability sector.

Synergy for people with different abilities and support workers is about life chances and the creation of opportunities. Therefore, the essence of synergy is to value difference.

Consider these thoughts of Amanda Gunawardena my current Academic Support Worker.

My name is Amanda Gunawardena and I am an Academic Support Worker at the University of Melbourne. I assist Direct Employers like Peter with computer based administrative tasks. Peter's knowledge and my abilities combined together generally produces fast, efficient and improved results as can be noted in this article. Peter has a lot of intelligence and expertise in the field of his study, but his abilities to put his thoughts to words is restricted by his slow typing speed, poor speech and eyesight. However, when I am there to assist him, this means that he can get his thoughts on paper at 50 words per minute.

For example, in July 2013 I had to help Peter prepare a conference paper as he was a keynote speaker at the Direct Support Professionals Conference at the University of Sydney. But not only did I help Peter to prepare the paper, I helped him train another support worker to play his paper using a software which translates text to speech and play a PowerPoint presentation. This is a task that would take Peter a phenomenal amount of time and effort, but due to our synergistic partnership, I was able to do this in next to no time.