Giving up my volunteers

As regular readers will know, since 2008 I have had live-in volunteers, 12 in total from countries around the world. What you may not be aware of is that in early January I ended this for a number of reasons I will discuss below, and started to employ traditional personal assistants at the weekends and evening, starting a new chapter after almost a decade of sharing my home with volunteers.

Like many things in my life, the volunteering scheme run by Volunteering Matters played an important role in supporting me to grow an develop into the people I am now. Having someone live with me providing me with the security I needed at a time when I felt vulnerable. It enabled me to build friendships with people I would not normally meet due to our differing backgrounds and in return, they have had the opportunity to get a real insight to living with someone with cerebral palsy.

I found it to be a great interdependent relationship where while they physically supported me, I could play the role of older brother and host. The best times with my volunteers were when they supported me with my travels, which I found very empowering and when the scheme worked at its best.

The volunteers were not always perfect and not without their problems but they were the right solution at the time. Each volunteer brought different qualities to the role and seem to play their own part in my development, even if it was how annoying they were made me more independent.

The core reason I gave up the scheme was that from this January they were no longer allowed to prepare medication in any project. Since this was the fundamental main reason I needed them, I had little choice to end my relationship with Volunteering Matter. I could have argued a solution but they were other factors that confirmed my decision.

I was annoyed at how their decision was simply announced without consultation or consideration. For me, it was as stupid as a hospital announcing their nurses will no longer handle blood. They gave no explanation to why they made the changes but I would suggest something went wrong in another project and they decided upon a risk evasive response.

Their decision came at a time when I was also reflecting upon the suitability of having volunteers in the for long term for a range of reasons. My need for stability and security had now been met in other ways and moving into a fully accessible ground floor flat in the centre of the city has provided me with more independence. I am not sure I wanted to continue trying to overcome the communication and culture barriers of having a volunteer in return for the support I now needed.

I also felt that Volunteering Matters decided to stop their volunteers managing medication was likely to just be a first step in ending providing support to disabled people generally because, in an era of rules and regulations, the projects had a level of risk to them the modern profit-driven third sector is not interested in. I had seen the organisation gradually lose its understanding and interest in these projects as staff committed to helping people with impairments had been replaced with third sector metropolitan bureaucrats.

It is the end of an era and a chapter full of wonderful memories and no regrets, but everything in life has a beginning, middle and an end. and this was my end for now with have live-in volunteers.

Disability is not the same as health poverty

Over the last decade, I have tried to explain how the disability landscape has naturally been changing and how more complex it has become, and here is another attempt. Since the 1970s, there has been two models of disability, the medical and social model, which I will explain below. Since 2010, I believe there has been a third model emerging that complicates the issue dramatically, and that is the concept of health poverty, which incorrectly defines itself as being a definition of disability.

As regular readers should know, the medical model sees disability as a medical problem, which has to be either fixed or eliminated. Now very much how of fashion, the solutions proposed under this model are therapies, treatments, operations and so on to cure people, or abortion and eugenics to removed these abnormalities from society. The era of believing science can solve everything at some point is over, although I fear the lure of eugenics has not been fully eradicated.

Disabled people in the 1970s, a community dominated by people with spinal injuries, was unhappy at this negative portrayal of their lives and created the social model. This argued that it was not their impairment that was the problem but rather how society responded to their impairments. This argued for accessibility of the built environment and other constructional changes. While the social model is deemed to be focused on physical impairments, I believe a fuller understanding of the social model can apply to all people with impairments but that is another story.

Roll forward to 2010 and the UK government reforms, along with the increase of lifestyle related impairments (obesity, diabetes, alcoholism, stress and anxiety), gave rise to a vocal ‘sick’ movement. Like all impairment groups with a new voice, they have assumed they are the only group ever to suffer as disabled people, ignoring the experiences of everyone else.

The pathway into long term impairment is through the sick role.  This is the social role of allowed people to have time off work for illness so long as they take responsibility for getting better if they are able to. A general demonisation of social responsibility means being sick is now seen to be a right. As people strive to become long term sick, hence causing conflict with the sick note and benefit assessment processes, they use a corrupted version of the social model to determine their social disadvantage to be an economic one.

This means there do not see their disadvantage in terms of their biological difference, nor their social exclusion from society, but simply the financial difficulties of being long term sick. They have demonisation work as a part of their life no longer available to them and sees any attempt to restore their biological or social worth as a betrayal of their legitimate health status.

Therefore disability is now defined as ‘health poverty’, the financial difficulties of not working because of health situations that could potentially improve if people desired it, which is often not the case. They see the only solution for health poverty as the provision of welfare benefits based on pity for people now self-rejected from society as self-defined inferior beings.

This left-wing notion of disability fits into the human rights model of disability, which is not the social model, and has been adopted by Equality and Human Rights Commission and the United Nations. Assuming the inferiority of disabled people, which the social model tried to challenge, these organisations merely see the rights of disabled people in terms of the elimination of their health poverty. So basically pay them a lot of money to stay excluded from society and the job is done!

The imposing of the health poverty model upon all disabled people undermines what as been achieved under the social model, and it is important this model is challenged for the prejudice it brings disabled people. The welfarisation of disability has been very damaging but it is time it was halted and we restored striving to include all disabled people into society as fully contributing citizens as the goal of everyone.

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