Confused? You should be! I’ve corrected the links now to Mark’s blog so you won’t end up in a daft loop back to where you started! I blame the imminent onset of British Summer Time, all too exciting..!
“Isn’t it peculiar how people – including those of us with disabilities, ourselves – take specific character traits and somehow universally attribute them to those with disabilities?”
For the full article, go to Mark’s blog and read his extremley erudite discussion of the problems associated with disablity and social judgments.
Not by much – it’s catching up with the blog! New photo though, and not of a blue Na’vi! Take a look if you feel so moved – here I am.
New theory of Down syndrome cause may lead to new therapies http://goo.gl/fb/zkX0 #psychologynews
This 64-year-old man did nothing wrong. He had learning (intellectual) disabilities and struggled to cope with the day-to-day demands of an ordinary life. All he wanted was the comforts of his home, his trips to the shops, and his cigarettes. What he needed and maybe didn’t know so much about was the support of his family and neighbours, and this he seems to have had in abundance. He also needed the respect and consideration of the wider community, some of whom hounded and harried him to the point of his death.
No one should have to tolerate the abuse and bullying to which he was subjected, seventeen grinding years of it. But sadly it isn’t new, people with learning disabilities, arguably the least equipped to deal with the moronic semi-articulate attacks of people who have reason to know better, have been bullied to their death before. One man was pushed off a viaduct, another was kept as a slave and beaten by his ‘adopters’ until his life was finally bashed out of him.
To say that this is not acceptable is to denigrate the memories of those who have suffered in this way. It should not be necessary to state the obvious. It should be so horrendous as to be unbelievable, but it isn’t. People with learning disabilities are poorly considered, poorly represented, often unable to represent themselves, at the bottom of the social pile.
Well let me say this; the people I work with are funny, they love music, they love their partners and their children, they have bad days, they have jobs, they make art, they do community work, they drive their families mad, they dance, they act, they engage in new and wonderful things, they are HUMAN BEINGS. The group I’m working with at the moment is helping us with our virtual world research and they may just be at the leading edge, the crack in the dawn of innovation, that will devolve to all of us in due course. What they are doing right now could influence how you find out about your hospital procedure in the future. Their comments and involvement could be the start of a future NHS information procedure that makes knowledge and consent available to all but the most incapacitated of us.
But above all that, isn’t this just about behaving in a respectful andcivilised manner to the people in our community? If you know of anyone who is being bullied and abused, just think about what you could do to help. It might make all the difference.
There have been some recent re-tweetings from my US friends that exemplify the paranoia around their health care reforms. Somebody famous (that I don’t know) is threatening (or promising) to leave the country if Obama succeeds on the grounds that it’s a license to euthanise innocent citizens, and another – Sarah Palin – has apparently jumped ship and gone to Canada for treatment. Let’s be clear, I have axes to grind.
First off, I was born the year the NHS came into being. I was one of the first babies whose mother was guaranteed medical attention without having to pay and so I was privileged to have the best care available at the time without cost to my working class, poorly paid family. Before that, the babies of parents such as mine could expect no help other than that a neighbour might be able to offer. Babies such as me often died and I didn’t.
Second, I have worked for the NHS for almost 40 years as a nurse and then as a psychologist so I’ve had long experience of it and all its failings as a deliverer of services. It is not perfect. Sometimes it has been brutal and uncaring, or at least the small local culture in which I was working seemed so. Most of the time though it has been overwhelming in its devotion to the principle of equal care for all and unstinting in its striving for better quality and standards in that service.
Finally, as a professional I have had exceptional training that has not been dependent upon a medical view of the world but has, in each of its incarnations, developed independent and critical philosophies of care that integrate with, challenge, and support medicine in its key role of health care delivery and the science and art of ill-health prevention.
I am not prevented from working in private practice. I am not prevented from seeking private treatment. I am not obliged to do either. I am paid well, I receive training, I engage in research, I work with some of the most vulnerable people in our society, I am proud to be both a deliverer and a recipient of NHS services. I am not afraid of being ‘retired from life’ or cast aside because I can not pay. The multi professional profile of our services that ensure medical opinion is only one of several perspectives on the ethics and cultural values of good care are protectors and safeguards in this.
Of course there are mistakes. Of course there are bad people and poor practitioners. And of course we can’t afford everything. But what is the cost to our morality as a society if we will not give to the poorest and least able the same benefits we would offer to our directors, executives, and landed gentry? One of our service users, a woman in her 40s whose intellectual level is somewhere in the lowest 2%, recently had heart surgery to replace a faulty valve. My team, her carers, and the hospital staff took great care to enable her to make the decision herself and to give her own valid consent to treatment. It was lengthy, painstaking, creative and resourceful but she understood and she was proud to be doing this for herself. That dignity is impossible to cost and no one asked us to do so – it was our job and her right.
This is a personal view and it comes from a place in which there is no unnecessary fear of becoming ill or needing treatment. I hope that, whatever you achieve in the US, it gives you the best of our system alongside the best of yours so that you don’t have to fear illness for monetary reasons either.