DO WE NEED TO CHANGE OUR CONDUCT AND LANGUAGE IN DEVELOPMENTAL DISABILITY? Dr G L Williams Paediatrician / Perinatologist PO Box 2514 The New Children's Hospital Westmead NSW 2124 Australia I trained as a neonatal paediatrician and developed an interest in developmental disorders in 1988. I am the medical advisor to The Australasian CHARGE Association and SOFT (Support Organisation For Trisomy 18, 13 disorders). Parents attending conferences reported that they felt hurt and disempowered by the conduct and language of some teachers and doctors. The particular words of concern were suffering, disability, cripple, mental retardation, blindness, deafness, handicap, client, customer, case and patient. The terminology I will to refer to The Shorter Oxford English Dictionary on historical principles of 19681 for some word examination. Blindness means is to render insensitive to light or colour. Also to hide or make difficult to trace - origins are in Middle English. To deprive of light (1643). To eclipse (1633), to provide blindages in gunnery (1850). In 1875 the loss of sight in one eye blindness was designated. In a figurative sense it means lacking in intellectual and spiritual sense. You are a case of Usher Syndrome, which means you have the condition of Usher Syndrome. People or children are not cases. As a medical student I was proud at the day to say I examined many cases of pneumonia, schizophrenia, appendicitis etc. The Faber Medical Dictionary (1953) defined case as an instance of any disease. Client comes from klaient, which is Middle English. Cluere means to listen or 'one who is at the call of his patron'. Another meaning is one who is under protection or patronage of another, a dependent. One who employs the services of a legal advisor. The Concise Oxford Dictionary defined client as a person 'using services of men' (lawyer, architect, social worker). Clientele, cliency, or clientage all have the same meaning. Clientele come from French introduced in 1563. Means a body of clients or dependents or adherents. In 1865 it took on the designation of a professional connection between lawyers and physicians i.e. and body of supporters or customers. The issue of calling sick persons; patients, client or customers has evoked an interesting discussion in two issues of The Medical Journal of Australia.2,3 Cripple comes from crypel from Old English, or krupilo Old Teutonic or krup in French. The latter meaning to creep 1648. Disabled from the use of limbs or meaning lame came from Middle English. To disable, to impair or to hobble. Customer has its origin from Middle English, means a person collects customs, which is a buyer, purchaser, dealing with prostitutes. One despairing parent said, 'my child is not a client or a customer. She does not partake in prostitution." The Oxford Concise Dictionary defined this word as "under the protection of patrician, dependant, hanger-on." Deaf comes from Old English meaning to be dull to perception, lacking or defective in the sense of hearing, unwilling to hear or heed, inattentive and lacking in essential character. Hollow, empty, unproductive, insipid. Deaf-mutism comes from Middle English, means a state or condition of being deaf. Introduced in 1653 was the name sport referring into the drawing art of full or empty hands to settle whether the match was accepted or not. Handicap introduced in 1649, meaning to draw or gain in the game of chance. To equalise the parties to a handicap by differing odds to be given, to weigh anyone unduly, often used in horseracing. Impair from Middle English empaire to make worse, less valuable, to damage, or injure, to suffer loss, to deteriorate. French derivation (1606) of impair is unsuitable, unequal, not paired or odd. Mental comes from Latin mens meaning mind. Mental deficiency therefore denotes shortage or lessening of mental ability. Mental retardation denotes according Taber means deficiency of intellectual development. Patient is defined 'as a person under medical or dental or psychiatric treatment' or 'having or showing patience.' Retardation comes from late Middle English and also Latin: retardare means to delay, slow down or hold back. Labeling And so the negative aspects labeling according Colleen Mandel4 has the following disadvantages: 1. it detracts from and may limit appropriate individualised care for children 2. once the label is assigned is difficult to remove 3. labeling that leads to subsequent categorical placement limits opportunity for abled children to become familiar with exceptional children, by the way I now prefer to use exceptionality instead of developmental disability 4. it establishes conditions for mistakes in minority groups 5. labeling inevitably implies that the problem reside within the person 6. In special education it may set into motion a self-fulfilling prophecy e.g. we say a child is mentally retarded; therefore, we treat the child as less capable and, recognizing our perceptions, he or she behaves in the expected mentally retarded manner; the child becomes what we have said. Stories Sophia has the CHARGE Association (show picture) and was born in September '79. A gastroenterologist at the Children's hospital because of feeding difficulties and lung aspiration saw her. A swallowing study showed gross and severe difficulties - he felt that she would not live long, as she would never be able to eat. Sophia proved them wrong, following gastrostomy; she is now independently feeds. She was diagnosed with severe deafness and the medical registrar shared the information with her mother without sensitivity and support. The parents, Pauline and Demos, were devastated and little hope was offered. Sophia attends a school for the hearing impaired, has excellent signing skills. She expressed Christmas in this pictorial is to be behold - show slide.5 Alex, aged 5 years, has miraculously survived the medical profession. He has Mosaic Trisomy 16, a Charge phenotype and Shapiro syndrome (show slide). He was the star at the last SOFT conference in the USA - see video clip. His Labrador is his most faithful companion. Alex is now an ambassador for The Guide Dog Association. His survival is credited to his mother, Karen. She, without fear or favour, against so many odds is determined to make him the best he can be. She wrote in her paper6 titled "Sharing the care or How do you teach an octopus to tie his shoelaces?" and I quote "the ordered and very specialised medical system of which I had been a part was like an octopus with tentacles going off in a myriad of directions with apparently little co-ordination and co-operation. Each of these tentacles believed they were helping the child and empowering the parent. However, the real experience is that parents are frequently left feeling powerless, belittled and patronised. The actual outcome is that the care of the child becomes fragmented and less than optimal." In the Sydney Morning Herald 1/11/99 (show slide) - Mr. Graham Innes is the new president of the Royal Blind Society and deputy disabilities commissioner with the Human Rights and Equal Opportunities. Graham uses a guide dog, a computer that has Braille and speech. He, a trained lawyer, is passionate about making sure that people have a fair go. He says "This is the ethos that I have had all my life and I think that this is underlying the Australian ethos." He also states that in our human relationships we are here to heal and to build partnerships. In the Reader's Digest October 1999, Stephen Kuusisto's7 story is depicted. The summary article comes from his recent book8 Planet of the Mind. He was born premature and sustained retinopathy of prematurity. He and could only see shifting colors and shapes. For most of his life he denied his disability and pretended that he could see. As you imagine several painful memories are recounted. In primary school, while reading a paper on the desk, a fellow student told him to get closer and then shoved his nose into the paper. In high school, while on a full scholarship in Finland studying Finnish poetry, Stephen was almost struck by a tram. He could not see his feet. He sat on a footpath, surrounded by by-standers, realising that he was making them responsible for his survival. On another day, he decided to run along the river walk in Iowa City. The footpaths were good and level. He heard men shouting and then "I plunged into a smooth slab of wet concrete". He had wet concrete in his head and beard and hanging from his shirt and pants. He said in an apologetic voice "I'm blind, I'm sorry, I'm really sorry." To his amazement a man drove him home and told him that his uncle was blind. He told him how his uncle got a dog from The Guide Dog Association. "I was embarrassed and grateful". It took another decade to admit that he needed help. Whenever Corgi, the dog, is called he jumps on him, paws his knees, presses his head and face. The dog kisses him; the tail is banging and tears run down Stephen's face. The trainer said, "Corgi is in love, a definite blind date". He nibbles his nose and places his front paws on his shoulders. Corgi repeatedly tries to climb in the bed at night. A walk in the street becomes his home and he loses the crouched posture of his blindness. As they journey together his faith in Corgi moves from belief into conviction and then to certainty. On their travels, Corgi is absolutely confident and in focus and control. The remedy for language and conduct The respect for an adult or child with exceptionality is vital. It is his or her inherent human right. The Turnbulls, remarkable teachers and parents of a now adult son with autism, in their landmark book9, make the following recommendations for teachers and doctors: * Accept families as they are * Listen carefully and emphatically * Allow families to feel comfortable with information and resources * Listen to hopes, aspirations, concerns and needs * Communicate with caring - avoid medi- and eduspeak. * Keep your promises * Allow the family's expertise to shine * Be available when needed. The Turnbulls' values10 of the special relationship with families are grounded on the empowerment that reaches not only the families but also the community and society: ('The family's vision becomes realities. They need new perspectives on what life can be as well as the support to fulfill their dreams. ( The families can direct their own lives and they can act on their preferences and allow them to build on their own strengths. ( Connections are crucial to family unity and family members need to be connected to each other and friends in the community. ( Less able does not mean less worthy. ( People with disabilities and their families are entitled to full participation in life. ( Families have many natural capacities and they need support to affirm positive contributions.' Miranda Statement (Charge Syndrome) - it can only happen in America11 This is a poignant example of parental empowerment and on the other side of the coin, an indictment of the medical and teaching professions. * I am a parent of a child with very complex problems * I need information about my child that may be time-time consuming and difficult to obtain * My child needs coordinated services from health care professionals and educators who know or are willing to learn about CHARGE Syndrome * If you cannot afford the time or do not have the capability to provide these special services, please refer us to someone who can A short sermon - bridling the tongue I would like to take you to James (NIV), who wrote the General Letter (around AD 50). I quote: Chapter 2 14 What good is it, my brothers (and sisters), if a man or a woman claims to have to faith but has no deeds? Can such faith save him or her? 15Suppose a brother or sister is without clothes and daily food. 16If one of you says to him or her, "Go, I wish you well; keep warm and well fed," but does nothing about his or her physical needs, what good is it? 17In the same way, faith by itself, if not accompanied by action, is dead. Chapter 3 5 Likewise the tongue is a small part of the body, but it makes great boasts. Consider what a great forest is set on fire by a small spark. 6 The tongue also is a fire, a world of evil among the parts of the body. It corrupts the whole person, sets the whole course of his or her life on fire, and is itself on fire by hell. 9 With the tongue we praise our Lord the Father, and with it we curse men or women who have been made in God's likeness. 10 Out of the same mouth comes praise and cursing. My brothers and sisters, this should not be. William Ward's lessons for life The adventure of life is to learn The purpose of life is to grow The nature of life is to change The challenge of life is to overcome The essence of life is to care The opportunity of life is to serve The secret of life is to dare The beauty of life is to give The joy of life is to love. Three take-home messages As parents, teachers, therapists, doctors and nurses, we are all sharing a journey, we are partners in family centered care. We are in a position great privilege and special opportunity - H.P. Blavatsky states "the grandest privilege of those who have the means is to alleviate suffering." 'Respect for pluralism is believed to be an element of our founding resolves; in practice, differentness may invoke isolation. Those most familiar with human variation, however, ultimately become captivated by the commonality of values and the continuum of contribution. We have much to learn from a far broader view and much to celebrate!'12 And so Shakti Gawain in Creative Visualisation records: "The most powerful thing you can do to change the world, is to change your own beliefs about the nature of life, people, reality, to something more positive ....... and begin to act accordingly." References 1. The Shorter Oxford English Dictionary on Historical Principles, prepared by Little William, Fowler HW, Coulson J, revised and edited by CT Onions, Third Edition - revised with Addenda, 1986, Vol. 11, N-Z, Oxford at Clarendon Press. 2. Are patients clients or people? Beverly Raphael, Brett Emmerson, The Medical Journal of Australia, Vol. 154, February 4, pages 183-184,1991. 3. Patient, client or consumer? Balakrisnan R Nair, The Medical Journal of Australia, Vol. 169, page 593, 7/21 December 1998. 4. Understanding Exceptional People, Colleen Mandell and Edward Fiscus, pages 17- 72, 1981, West Publishing Co, St Paul, Minnesota 5. The Charge Parents Association Newsletter and frontispiece of The Charge Handbook 1998. 6. Karen Schuler's presentation at AWCH in October 1997. 7. Leaving the Land of the Blind, Reader's Digest, Stephen Kuusisto, October 1999, pages 34-39. 8. Planet of the Mind, Stephen Kuusisto, 1998, Faber & Faber Ltd., London. 9. Families, Professionals and Exceptionality: A Special Partnership, Ann P. Turnbull, Rutherford H. Turnbull III, 1990, 2nd Edition, Merrill Publishing Co., Columbus, OH. 10. Families, Professionals and Exceptionality: A Special Partnership, Ann P. Turnbull, Rutherford H Turnbull III, 1997, 3rd Edition, Prentice Hall Inc, Simon & Schuster, New Jersey. 11. Charge Accounts, Vol. 7, No.3, Fall 1997 (USA). 12. The Right to Be Different, Chapter 96, pages 786-789 In Developmental-behavioral pediatrics, Melvin D. Levine, William B. Carey, Allen C. Crocker, 2nd edition, 1992, W.B. Saunders, Philadelphia, PA. Prepared as keynote address for: The 5th National Deafblind Conference, West Australia. Theme: DeafBlindness: Keeping in Touch Beyond 2000. 7 - 10 April 2000. Esplanade Hotel, Fremantle. Dr George L. Williams, PO Box 248, Menai NSW 2234. Phone: +61 02 9543 0222 Fax: +61 02 9543 0510 Email: george1@one.net.au 4th December 1999. A:/MS Word 95-98 developmental disability abstract.