Disability speak Communicating and interacting with people who have a disability. WHAT WE WANT What we want is for you to look at us, not turn away. What we want is for you not to stare or run away. What we want is for you to give us a chance, so please won’t you stay? We have needs and desires like everyone. We just need some patience. We just need some time. So come on over and talk to us, Stop and smile and say hello anytime. What we want is for you to listen. What we want is for you to take us seriously. Do not tell us what to do or ignore what we say. What you think is best for us may not always be the way. Stop and smile and say hello. We have a disability, not a disease, You will not catch it if we sneeze. People are scared of talking to us. Can’t you see our faces before our chairs? Look into our eyes and see our abilities, not our disabilities. Don’t try to change us, we are who we are. We live with our disabilities, So why can’t you? A poem by clients from the Ringwood service of Scope. This publication has been created by Scope - formerly the Spastic Society of Victoria - as a guide for those communicating with people who have disabilities. Leading innovation in disability services across Victoria, Scope recognises that by addressing misrepresentative attitudes and actions towards people with disabilities, the greatest opportunities for full community access and equity for people of all abilities will be made possible and community awareness will be enhanced. Introduction Today, over three million Australians are living with some form of disability. People with disabilities come from all sectors of the community. They have the same hopes and dreams as everyone, and the same rights to live their daily life in a welcoming community. These guidelines assist in the fair portrayal of people with a disability. The way in which people with disabilities are characterised can prolong outdated stereotypes as people who are feared and marginalised. People with disabilities are rarely portrayed as living an average daily life. Yet they remain people first, and just want to be treated as equals in a welcoming and inclusive community. Actions and words have the ability to enhance or corrupt the way in which members of the community treat or view people with a disability. As disability can affect people in different ways, communication is not always just a matter of speaking and hearing. It can involve a range of methods by which people choose to communicate (such as via sign language or communication aids), depending upon the level of disability and the way it affects each individual. People with disabilities do not want to ignore the fact that they have a disability, which - depending on their condition - might result in difficulties with mobility, communication or independent muscle control. But, quite simply, people with disabilities do not want their disability to become the defining aspect of their life. Communicating Dealing with people who have a disability - particularly one that affects communication, muscle control or mobility - may, at first, present a period of adjustment. If a person has difficulty in communicating, others - with no intention of disrespect - often make incorrect assumptions about that person's ability to understand. They sometimes behave awkwardly. Or inadvertently use terminology that is outdated and unacceptable. When referring to people with a disability, avoid using references that potentially depersonalise, label or limit the individual. Unacceptable phrases such as sufferers, the blind, retarded, crippled, handicapped or wheelchair bound can – and do – strip an individual of dignity and selfesteem. For example, it is incorrect to call people with Cerebral Palsy (CP) sufferers, because CP is a condition not a disease. Simple reference to a person with Cerebral Palsy is sufficient. This is the case for many other disabilities. The term political correctness has often been attached to disability issues but, more accurately, acceptable terminology is really a question of common courtesy. It is preferable to look beyond the disability and recognise the individual whose life is often very similar – rather than being different – to ours. Always emphasise the ability, not the disability; ie. uses a wheelchair rather than is confined to or is wheelchair-bound. Avoid portraying successful people with a disability as extraordinary. While is it often relevant to acknowledge any extra effort required for a person with a disability to achieve something which able-bodied people take for granted, overstating the achievement or the disability inadvertently suggest that original expectations were not high. People with disabilities are simply dealing with life's daily problems in their own way. Media tips When interviewing people with disabilities, the following considerations will prove helpful. See people with disabilities as individuals and portray their individuality. Respect the rights of the individual with a disability. If you want information about a person's disability, ask straightforward and reasonable questions. Natural curiosity, such as that exhibited by a child, is acceptable to people with disability. Wherever possible, do not focus on a disability by constantly making reference to it. Deal with it by making suitable reference to the disability, and then focus on the points of actual relevance to the story. Disability is only one aspect of a person’s life, which should not be magnified in importance. Portray a person as they are in real life … apart from having a disability, they may also be a parent, a professional, student, or Paralympian. What’s out Affliction - An emotive term best avoided. Confined to a wheelchair - The chair is a mobility aid, making the notion of confinement inappropriate. Cripple - Strips individuals with mobility difficulties of their dignity. Disabled person - Puts the condition before the person. Diseased - Many disabilities, such as Cerebral Palsy and spinal cord injury, are conditions not caused by illness or disease. Dumb - Through misuse has lost its original meaning. Preferred term is speech impaired. Fit - An outdated way of describing a seizure. Handicapped - Terms like this are negative or imply failure to reach a general stereotype of personal perfection. Invalid - A negative term for a person with a disability that has become invalid itself. Physically challenged - A poor attempt at politically correct terminology. While well meaning, it is patronising and can alienate people with disabilities. Retarded - An outdated and demeaning description of a person with a disability. Sick - People with a disability are not sick - they simply have a disability. Spastic - Through misuse and misunderstanding, this term is considered archaic and is often applied aggressively and inappropriately. Preferred terminology is person with a disability. Special - Patronising. All people are special and people with a disability should not be separated from the rest of the community. Sufferer - One of the most commonly misused terms. People with a disability do not consider themselves to be sufferers. This term is negative and incorrectly implies a need for sympathy. Vegetative - A more respectful and accurate way to describe this condition is the word "coma". Victim - Wrongly casts people with a disability as dependent and without hope. Wheelchair bound - Focuses on the chair - which is just a mobility aid - rather tahn the person. More accurately, a person with a disability uses a wheelchair. What’s in Condition -Most people with a disability have a specific condition, and are certainly not diseased. Hearing impaired - Someone who has difficulty with hearing. Intellectual disability - Preferred to the archaic and de-humanising term mental retardation. Person with a disability - Considered to be more respectful because it identifies the person first rather than by their disability. Seizure - Preferred over the outdated term fit. Speech impaired - The most appropriate term to describe someone who has difficulty with speech. Uses a wheelchair - Casts the wheelchair as a support tool and portrays the person as being in control. Vision impaired - Used in preference to the generic term blind. Interacting How to act towards people with disabilities sometimes causes confusion, especially when it is unfamiliar. When interviewing or speaking, socialising or meeting with people with disabilities, the following common courtesies are offered as helpful hints to put everyone at ease. Act naturally - relax and just be you. It is not necessary to monitor every word or action. For example, there is no need to be embarrassed if you use common expressions like "see you later" to a person who is vision impaired, or “run along” to someone in a wheelchair. When speaking with a person in a wheelchair, extend the courtesy of placing yourself at eye level during the conversation. Greet a person with a disability just as you would greet any individual. If you normally shake hands, then offer the same gesture. If they are unable to shake hands with the right hand, the left hand is acceptable. Or simply address the person directly, nod and smile. When talking with a person who is vision impaired, always identify yourself and others in your group. For example: "I am … and on my right is John Smith". Also identify each person you address in the conversation. Do not assume a person with a physical disability also has, for instance, a hearing disability, or that a person’s mental capacity is diminished in any way. Speak in normal tones and avoid condescending language. If a situation develops in which you believe a person with a disability requires assistance, first ask if they would like your assistance before moving to help. Assistance might not be required. However it is always acceptable to make the offer. Do not patronise a person with a disability. For example, if a person is in a wheelchair it is unacceptable to pat them on the head or shoulders. It is acceptable, however, to lightly tap a deaf person on the shoulder. Not all deaf people can lip-read but, when addressing deaf people, always speak slowly, clearly and fully face-to-face. When speaking with a person who has difficulty communicating, be patient. If necessary, avoid correcting or speaking for the person. Ask short questions requiring short answers, a nod or shake of the head. Never pretend to understand. Instead, repeat what you have understood and await confirmation. Or admit that you do not understand and ask the individual for clarification. Never pat or touch a guide dog while it is in the harness. The animal is working and distractions for the dog may cause harm to its owner. A person with a disability is not necessarily someone who is chronically sick or unhealthy. Without a permit, do not park in spots designated for people with disabilities. Let your child speak with people with disabilities. Wheelchair etiquette Do not physically move a person in a wheelchair unless you are asked for assistance or you first offer help. This is the same as making a decision for the individual. Adults with disability want to be treated as independent people. If offering to help a person in a wheelchair or other mobility device, wait for the response and listen carefully to any instructions. You should not lean against or hang on to a wheelchair or any other mobility equipment. This is dangerous and can unbalance a person. Equipment is also the property and personal space of a person with a disability. TAPESTRY Is life for me so different? Of course it is. But different to what? Different to whose … How is it not the same? I breathe the air everyone does, I've learned painful lessons I've experienced love and loneliness. I become angry And feel foolish, as everyone. I've been hurt and caused pain To the people I care the most for. I've shed tears in the middle of the night Over the smallest and silliest memory. My life is just that … Life. Every experience you have, Every good one, every bad one Will sew your own tapestry. Lay your unfinished tapestry next to mine And compare it … Is life for me so different? A poem by Viviana Ortolan, a client of the High Point Industries employment unit of Scope. People with disabilities are just like everyone else… usually with the same hopes and dreams, ambitions and capabilities. Some may have to find a different way to reach their goal, but they generally reach it just the same. We invite you to contact Scope regarding issues, references, or matters of protocol surrounding disability. It is through awareness and understanding that true community inclusion for people with disabilities will be achieved. Scope is committed to overcoming the personal, structural and attitudinal barriers that often prevent people with disability from participating in community life. Fax: (03) 9843 2030 ABN: 63 004 280 871 830 Whitehorse Road (PO Box 608) Box Hill Victoria 3128 Tel: (03) 9843 3000 Website: www.scopevic.org.au Email: contact@scopevic.org.au Media contact: communications@scopevic.org.au Published August 2005