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My battle with Mencap
People whose brains are damaged cannot have equal rights
It is tempting, sometimes, even for a columnist, to turn away from real controversy. Controversy is so wearing. It seems to drag everyone in directions they never dreamt of, without necessarily achieving anything. So I am tempted to stop writing about the rights of the mentally handicapped; I don't like the feel of the animosity I sense coming in my direction. And yet I feel I cannot turn away. Mental handicap is not a subject I chose. It chose me, for family reasons, as my sister is mentally handicapped. And, for those same reasons, I cannot abandon it.
Last weekend I found myself on the Today programme, defending something I had written on mental handicap in The Daily Telegraph to Lord Rix, chairman of the charity Mencap. Lord Rix's tone was not friendly. I have taken issue before with Mencap, and it with me; this time Mencap was angry at what I had written about its new constitution, under which mentally handicapped members of this large and complex charity can become trustees of it. It seems that they could also have done so under the previous constitution, which I did not appreciate. That does not in any way alter my point; it is quite astonishing to me that Mencap, or anyone else, should think it right to allow a mentally handicapped person to take on serious legal, financial and moral responsibilities, which he or she could not possibly understand, let alone fulfil.
Under the new constitution Mencap will have a national assembly, an enlarged, policy-making body of about 50, a third of whose members will have learning disabilities; there will be a smaller group of trustees "ensuring effective governance", any one of whom could in theory be a person with a learning disability - the more recent term for a mental handicap. I don't doubt the good feeling and good intentions of all involved, but how can one fail to doubt their common sense? Either this is just window-dressing or tokenism, in which case I think it's demeaning to all concerned, or else - well, or else what? I think we are seeing a strange shifting of the goal posts here, in the name of equal rights, and while it may be well-intentioned I think it's extremely misguided.
Mencap has been a leader in campaigning for equal rights for the mentally handicapped. Its chief executive, Fred Heddell, said in a letter to me that Mencap's aim has always been to create the opportunity for people with a learning disability to be equal citizens in all respects (my italics). That includes the right to marry and to have children, the right to vote and now the right to be a trustee.
In a discussion with a Mencap official recently, trying to think of some right so inappropriate that even Mencap would not aspire to it, I said that I supposed he would not include the equal right to be a juror. To my astonishment he said he would. When I protested that a fair trial depended on following the arguments on both sides, he said he thought there were already many jurors who did not understand the arguments in court anyway.
Mencap is not alone; its approach is the new orthodoxy, and not only here but in other parts of Europe and the United States. I have spent the past week in Holland discussing this with others who campaign for full equal rights and even claim that the mentally handicapped contribute equally to society. This dishonest thinking fills me with grief; it's a simple case of psychological denial. Their general view is that there isn't really any difference between people with learning disabilities and the rest of the population. There are probably lots of dozy and incompetent old buffers sitting on boards here and there as trustees, but supposedly normal, and there are lots of juries who don't know what's going on. Indeed, there is a move to take juries off complex fraud cases because they can't understand them. This doesn't seem to me to a good argument for including yet more incompetent people, but you get the drift.
The notion of being different, of having special needs, is being broken down, in the name of equal rights. I don't understand the motive. But one thing I do know. People whose brains are damaged, whose intelligence is seriously impaired, do not have and cannot have equal rights. They cannot undertake the responsibilities that go with rights, and for many of them there is little that they can do at all without a great deal of support and encouragement. Most of them need round-the-clock support, even when living fairly independently, and those few that don't still need a great deal of expensive help and monitoring. (The bright and articulate people who speak in learning disability pressure groups are highly unrepresentative.)
In this sense, sadly, the mentally handicapped have fewer rights. But in another sense - if we must use the language of rights - they have more rights than other people. The mentally handicapped have more rights than the rest of us to public money, to state support, to better opportunities and to special consideration of every kind. In Britain today most of them do not get nearly enough of any of those things. In justice to everybody, we should be campaigning not for their equal rights but for their greater needs. If that is wildly controversial, then I am Alice in Wonderland.
The Sunday Telegraph | Sunday, November 29, 1998
Comments:
I came across this article while using google to investigate a problem relating to my autistic son. His bank seems unable or unwilling to ensure that he cannot make cash withdrawals when he has no funds in his account. He is being exploited and I am finding it very difficult to find a sound solution.
My son has Asperger Syndrome. He works as much as he is able, receives state benefits, and has to operate a bank account. He will probably always be dependent on us, but this obviously cannot be a permanent solution; one day we will not be around to drive him around, give advice, and so on. We therefore have to do all we can to help our son manage in the real world.
I do not understand why Minette Marin is taking the trouble to argue against Mencap policy on trustees. She clearly has some experience of mental disability through her sister; but she then seems to believe that this specific experience can be generalised as if she understands all variants of mental handicap/ learning disability. Sadly, she uses language that appears blatantly prejudiced. She speaks of "people whose brains are damaged" and "people whose intelligence is seriously impaired". She seems to think it is self-evident that she can define those with a learning disability in this way; I think she has a lot to learn.
I too have a mental disability. After retiring from my career on health grounds and attempting to return to paid employment, I have recently had to go to an Employment Tribunal to establish in law my disability status. Legally, I am disabled within the meaning of the Disability Discrimination Act. Specifically, the long-term diagnosis of my Chronic Fatigue has been recognised.
I do not think anyone fully understands what is wrong with me, although chemical imbalance in my brain seems to be an underlying factor. In this sense maybe my brain is damaged; why should this affect my ability to make serious legal, financial or moral decisions? I am treasurer for a charity and as such am a trustee. Some members seem unable to accept my voluntary effort, but curiously seem content to leave me to do much of the work; perhaps these people read Minette Marin's articles and thus fuel their prejudice?
I represented myself at my recent tribunal hearing against a barrister representing my employer. I found it very difficult to follow the arguments on both sides. What should have been a half-day hearing was dragged out by what to me was pointless legal argument by the barrister. I was tired but the system took this into account and allowed time for me to compose myself. I won. I think the demands made of me on that day were beyond those placed on a juror in an ordinary trial.
I find it offensive that there should be any assumption that I should not assert my rights. I do not think my son would be able to do what I can; this is not surprising given that there are significant differences between our disabilities. My son has a learning disability, but he is now an adult. In some ways he is still like a toddler, but this does not mean he must be treated as a three-year-old all the time. Despite his limitations, my son would be able to give a moral judgment on Minette Marin's views. Despite his autism and social impairment, I think he might show more sensitivity and understanding than she does.
WM, 8.11.2004
Posted by: Will Messenger | 8 Nov 2004 18:18:41
I would really be interested on the writers comments now 6 years on from Mencaps constitutional changes. Nowhere in her paper has she mentioned support.Support is the key towards all of us understanding what is happening whether it is to become a Trustee on a major Charitiy or to have a fufilling life. Taking time to understand a persons needs and working together to ensure we can contribute in as meaningful a way, with whatever we choose to do.
People with a Learning Disability have dreams/aspirations too.However Many cannot acheive these dreams because of the misconception by many so called Normal people that People With a Learning Disability will never be able to do anything.
Well who's fault is that? Certainly not the person with a disability.
When you are constantly not encouraged to acheive your dreams or aspirations is it not then suprising that many people do nothing, other than what they are told to do, Society as a consequence denies so many talented people their right to be members of their community or wider if they so wish..
Whoever we are, we all have something to bring to society no member of our society should be labelled as unable by anybody else look for people strength's look past a so called Disability and look at the person for a change.
Posted by: Clair Roberts | 21 Jan 2005 18:21:19
My own experience since the constitutional changes is that Mencap remains a very troubled organisation. The housing and buisness unit has re invented itself twice over 4 years and still fails to address organisational hypocracy and internal bullying.
Posted by: Ian Glen | 11 Jan 2006 13:41:17
Article; My battle with Mencap Nov.1998
Dear Minette Marrin
I came across your article when trawling the internet for addresses of as many Mencap branches as I am emailing them direct in an effort to gain support for Rescare's petition to the House of Commons.
You were so right in your article - but what do you get by way of response from two carers - the same myopic response - they are OK - with little thought for the more severely and needy people.
I have been engaged in a lengthy debate on the Foundation for People with learning Disabilities Choice Forum and the views put forward for justification for total inclusion and a one-size-fits- all solution, and the indifference to the desperate plight of those suffering from the fall-out of Valuing People policy are unbelievable.
I emailed you recently re Rescare's efforts, and you kindly acknowledged my message - but please do not think that I am harrassing you as I appreciate that you have many other demands on your time.
First,however, my admiration for you grows. To take on Mencap in your position takes courage - I have been pressing them for twenty years, increasingly in the past ten, to get real about the perils of radical normalisation - but I had little to lose.
I can appreciate that this is a delicate issue from any journalist's standpoint with the media - as it seems that interest evaporates the moment Mencap is criticised.
Nevertheless, I am convinced that this is going to prove to be a most irresponsible and dangerous philosophy that will end in an irreversal social tragedy - and when the day of reckoning comes the main perpetrators should be called to account. Evidence I have collected points towards the King's Fund Centre and Mencap.
I warned the Chief Executive of the King's Fund Centre in I986 that its proposals would lead to the closure of day centres and the loss of structured and specialist support services - its happening now - but this individual still persists in trying to spread this flawed philosophy across the Continent. ( He is no longer with the KFC)
Many thanks for having drawn attention to this problem again more recently. I have met many people who have valued your efforts.
Best wishes,
Charles Henley
Posted by: Charles Henley | 7 Oct 2007 20:44:25
