IMAGE MATTERS

So, questions John Dunne, Brothers of Charity Services, Galway why is professional literature on people with a learning disability so very negative?

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Psychology originally had three distinct missions: curing mental illness; making the lives of all people more productive and fulfilling; and, identifying and nurturing high talent (Seligman and Csikszentmihalyi, 2000). The needs after World War II, particularly in the hospital treatment of returned veterans, meant that funding became available for research and practice applied to the gravely debilitating conditions that prevented people resuming lives as ordinary citizens. Psychopathology became the major focus of psychology, and its two positive missions got lost. This was reflected in the kinds of research that were carried out. Articles in journals focussed on the negative 14 times more often than on the positive (Meyers, 2000). Efforts are now being made in the USA to restore a more positive psychology.

This led me to wonder what negative to positive ratio would a Learning Disability literature search show? I surveyed the abstracts of all articles published in the five years 1992-2000, and was startled to find that less than one percent focussed on anything positive regarding people with a learning difficulty. Over 99% were negative.

FIGURE ONE: Learning Disability Articles with a Positive Focus 1996-2000
(A Survey of PsychSCAN: LD/MR, Volume 15-19)

Total Number of Articles: 2,789
Number of Articles with Positive Focus: 21
Percentage of Articles with Positive Focus: 0-75%

People with a learning disability certainly have significant problems and challenges that need to be addressed, and researching these topics can have positive results and lead to new insights and forms of intervention. In that sense, the negative topics can have positive outcomes. But something is surely wrong if the published literature is almost entirely negative, with almost nothing good to report about people with a learning disability.

The overwhelmingly negative literature is all the more curious in that it is not borne out by everyday experience. When we have visitors who have had little or no previous contact with people with a learning disability, afterwards they talk primarily not about the programmes or staff, but about the great humanity of the experience of meeting the men and women who use the service. They are moved by the welcome and spontaneity, by the keen personal interest, and by the affectionate kindness and good humour. Clearly their hearts have been touched.

To further explore this seeming contrast between the focus of research and the reality of people with a learning disability, I carried out unstructured interviews with a small number of colleagues, asking about their personal experience of the characteristics of people with a learning disability. This generated the twelve broad categories that are listed in Figure Two. Detailed elaboration on each category would make this article too long, but it is worth offering some quotes from those I interviewed.

Openness

‘I was visiting a training centre where I had never been before, and as I was there early, I went into the canteen and immediately I was at home. There was one man sitting on his own and I just knew that I could go and sit beside him, that he wanted me to go and sit with him. There was openness, completely at an intuitive level. He did not give me any particular sign, but there was openness in the body language and in the energy. There is an openness with most people with a learning disability: they are not as defended as other people, not as caught with “Who is she now, and what is she going to think of me and what I have to say; and how do I make an impression?”’

Acceptance

‘There is great acceptance. A person with learning disability is going to take you first of all as who you are yourself, not as your role. The encounter is from person to person. The boxes are not there, the boxes that we put one another in, and while we might try to overcome them or be polite to one another, they are there to different degrees. I do not find that with our people. They bring you somewhere deeper in yourself, a place of greater humanity and vulnerability. It’s just this whole thing about not being threatened, not feeling threatened, so I’m allowed to be who I am. I have nothing to prove. Is that because of their disability? I do not think so. It’s “nothing to prove” because of their openness and acceptance.’

Giving and the generation of loyalty and love

‘They want to do something for you. They ask “How is your back?”—and my back might not have been mentioned for a year. They really enjoy doing things of practical help. Many of them are good at it.’
‘The effect that the experience [of knowing people with a disability over many years] has on me is that I hugely want what is good for them, it really engages me, motivates me, makes me want things to be right for these people. I want to see them valued and appreciated, because I have experienced something of who they are and what they give to me.’

Spontaneity and naturalness

‘Watching actors in the Blue Teapot Theatre Company going out there, not being nervous, loving the stage, no stuff going on—“What will they think of me?” “What if I go blank?” “What if….” They just feel that people would be delighted that they were going on stage because they are so delighted themselves.’

Characteristics of People with a Learning Disability:

  • Openness
  • Acceptance of others
  • Presence
  • Living in the Now
  • A calming influence through their slower pace of life
  • Spontaneity and naturalness
  • Enthusiasm
  • Giving and generating loyalty and love
  • Trust
  • Helpfulness
  • Capacity for forgiveness
  • Builders of relationships and community
Presence and living in the Now

‘It is a presence… The Buddhists spend years meditating to try and come into the present moment and our people have it. Now, maybe they have it because of a disability, but maybe they’re enlightened Buddhists under a tenth lifetime! The Buddhists go on about you’re either looking into the future and trying to plan things, or you’re stuck in the past and hung up on things, and all there is in reality is right now. That is how I feel many of our people are.’

‘I think that something that is really vital is the idea of the moment. I see that in my work of catechesis with people with a learning disability. The whole idea of the history of salvation as a story doesn’t exist. You just cannot go that route. What a person is giving is not for yesterday or tomorrow, it’s now.’

The slow pace and calming influence

‘It’s calming, I think because it brings me into the simplicity of now. There is no agenda, nothing to prove, and nothing to argue about. When I sit with them when they are doing art, and they get so absorbed into it, especially the people with autism. On a busy day Seán can be very distressed. You do something calm with him, or when we go into town and sit having coffee, he completely calms down. Its just the ritual of the buns and coffee and he’s in his own world, but sometimes he puts his hand here on me and says, “Thank you,” and will leave the hand there which is amazing for him. Now that just melts me completely. So there is something about the slowness, the pace, that’s extremely deep. It cuts right through all my defences. It goes right into the bone…. The pace is slower, and everything slows down.’

Builders of relationships and community

‘My cousin John Paul could have ended up in a centre had his mother showed interest years back. Instead John Paul has been working on a farm in the local community. Working at being part of the community and claiming his place in the community. Everybody knows John Paul.’

‘When he wants to work he will, but production is not his agenda. His agenda is being John Paul. In order to be John Paul, he seeks to have a relationship with others. If he’s not being productive in the conventional sense, he is productive in calling people to another place. I think that it’s calling people to a place of humanity, of fraternity, but also calling people to their very place of truth and of identity.’

These characteristics are further validated by Wolfensberger’s 1988 article (almost uniquely positive at that time) where he listed assets of people with a learning disability ‘not commonly acknowledged’. He places first the growth of ‘beautiful heart qualities… that mean that resources are more concentrated on relationships.’ This is in keeping with the characteristics of people outlined above.

Image matters

Image matters. Political parties, business corporations, entertainers—all of them pay big money to promote a positive self-image. Indeed, we all worry to varying degrees about how others see us: we want to be liked and approved of. So powerful is this need that there are laws against negative stereotyping in the media, whether based on gender, race, sexual identity or disability, because it is recognised what a damaging impact such writings have when repeated again and again. Are professionals who read the journals regularly likewise influenced by the relentless negative focus?

Those committed to people with a learning disability aim to have them known and accepted in their own communities and by society in general. To achieve this, we have to be convinced that this is not only their right, but also that they have something to offer to others, such as is described in the characteristics above. It is essential that we think and speak about them in a positive terms whenever opportunities present. Professionals need to undertake positive research. Service providers and parents are often forced into contributing to a negative stereotype as they focus on the huge needs not being met by service funding; they must always balance this image by including valuing, humanising statements about people with a learning disability in all contacts with the media and politicians.

We must always remember that the self-image of people with a learning disability ultimately comes from what is mirrored back to them by others, especially those closest to them.

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