Business Club Meeting: Disability Awareness

Tuesday 3rd July 2012, 6:30pm to 8:30pm
at
The Island, I Flat Iron Square, Bankside SE1 0AB

"Disability Awareness"

Within the United Kingdom, people with disabilities comprise a market well in excess of £11 million. Members of the Chamber might well already be providing or able to provide goods and services to this market. However, there exists a fear factor and there are many pre-conceptions associated with disability which act as a barrier.
This seminar was designed to help break down and remove the fear factor and the pre-conceptions. We did this through an informal two hours where a dynamic disabled speaker invited members to discuss differences in a frank way and explained simple techniques that to help remove unnecessary obstacles in communication.
As usual a free buffet with wine and soft drinks was served before and after the presentation and attendees had an opportunity to network and to discuss the issues raised.
The event was sponsored by Awards For All Programme of the Big Lottery Fund.

PRESENTATION NOTES FOLLOW ON THE NEXT PAGE

Communication & Disability
Jennie's presentation opened with her putting the following question to the 20 members attending
HAVE YOU EVER BEEN ON HOILDAY AND NOT BEEN ABLE TO SPEAK THE LANGUAGE?
Film An English person shouting loudly in English to someone who clearly does not understand English, to mock up an 'English person abroad' scene.
How did this make you feel, frustrated, stupid, isolated?
Some people with a communication impairment or who are deaf and unable to speak can feel at least one if not more of these emotions every day of their life while trying to fit in to an able bodied and speaking world. It does not always mean that people who are unable to speak can't understand you or they are unable to have a conversation with you, it just means that you might have to work a little bit harder.
Text: DON'T WORRY IF YOU GET IT WRONG! 'We are used to people like you!'
If you are in France but unable to speak French, as long as you are seen trying to make the effort by using a phrase book for example, the locals are much more likely to make an effort back with you.
Hints and tips.
Video Jennie talking with someone with a communication impairment.
Jennie asks, "Can you indicate how you show me "yes"?"(Question put 3 times)
Jennie asks, "Can you indicate how you show me "no"? (Question put 3 times)
Disabled person tries to speak but J doesn't understand what has been said.
Ask the person for the 'subject matter' and see if you can understand it, you might both be talking about completely different things! Ask the person to repeat and then rephrase if you don't understand what it is that has been said. There is no point in trying to say the same thing over and over again, you will both get frustrated and bored! REMEMBER it is OK not to get it right the first time and it is not a reflection on you as long as you try and get it right and spend time in doing so -that is what matters.
What if this does not work? Ask if the person has a communication board with them?"
Images were screened of what some boards can look like.
If they indicate yes, ask them if you can look for it. It will most likely be in their bag or attached to the back of that persons chair.
If they indicate no, then ask that person is there is anyone around that would understand them better than you could. If the answer is yes, then ask them if they would mind if you asked someone to help interpret the conversation; explain that you really want to know what it is they are trying to tell you.
Remember:
Take away the fear factor and stop listening to the inner chatter in your head telling you how embarrassing it is that you cannot understand what is being said to you. The more wound up you get the louder your inner chatter will become and that is not good or useful for anyone. You are a better communicator than you think you are, just relax and have faith in your ability to be capable of communicating with another human being even if they are a bit different from you.
We have all been in situations where it has been difficult to communicate, for example when travelling abroad
- Was this experience frustrating?
- How did you manage to communicate?
- Did you have to simplify your message? Did people respond to you differently because you couldn't communicate normally?
- Did people "decide" what you needed?
- Did you feel your personality changed, eg your sense of humour, your frequency in entering a group conversation?
Imagine having such difficulties all the time! For example if you are deaf, hard of hearing, find speech difficult.
It is normal to feel embarrassed if you can't understand someone with a disability at first - but you shouldn't avoid trying to communicate.
If you can't understand someone,
Ask them to repeat, repeat, and then rephrase.
If you still can't understand, tell the person, "I'm sorry I'm still not understanding. Is there anyone around you know who can explain?"
- Almost everyone can communicate with a yes/no signal, if nothing else.
- Remember not to panic, and listen! Many people with speech impairments are taught to speak one syllable at a time. Eg "Where-is-De-ben-ham's?"
DEAF
Text: How many deaf people are there in the UK?
When talking about the number of deaf people in the UK, the most accepted estimate for deaf and hard of hearing people in the UK is 9 million, which is 15% of the 60 million people living in the UK, or one in every seven people
How many BSL users are there in the UK?
▪ 9 million deaf people in the UK
▪ 8.3 million are hard of hearing
▪ 123,000 are profoundly deaf
▪ 50,000 deaf people are BSL users
▪ 24,000 are deaf and blind
What is BSL? BSL is short for British Sign Language and is a Visual Gestural language, and it is used by many British deaf people and their families.
Film (Talking head of a deaf person) "As the name suggests BSL uses signs (gestures) that others see (visual). It is not simply a version of English that replaces words with signs or gestures. It has its own grammar and syntax very different from that of spoken or written English. It evolved separately from English, and some of the signs are derived from a visual representation of what the object or action actually looks like.
As with any language, there are a number of local accents in BSL. This may mean that people from different parts of the country will use slightly different signs for the same thing. Occasionally these signs are significantly different. However, this does not mean that one sign is correct and the others are wrong. It is simply the regional variations. However, it is not a language that relies solely on manual hand shapes and actions. Much of the information is contained within facial expression and mouth patterns that are used simultaneously with the sign. These are known as non-manual features.
"What is Sign Supported English (SSE)? This is another sign language used in the UK. It uses signs borrowed from BSL but delivers them in English word order. It is often slower than BSL, particularly when signing longer phrases and sentences as it can lack the ability to deliver several units of information simultaneously.
So what does all this mean and why do you need to know it?
If you need to communicate with a deaf person in your work and the only way you feel comfortable to do so is by writing things down, then there are some things you need to know and understand.
Some deaf people are not able to read or write very well due to the fact they don't speak English -they sign BS. If a deaf person writes something down for you and the grammar is different and it all seems a bit back to front, this does not mean that person has a learning difficulty or is 'stupid'. It just means they have written in it in their own language just as French or a German person whose English is not very good might.
Lip pattern hints and tips.
Ask the person if they can lip read you or if they want to have the information written down.
If they want to lip read you:
Never talk to a deaf person with your hands in front of your face and mouth.
Good eye contact is important so don't wear sun glasses.
Don't look or turn your head away while talking to a deaf personbecause they need to see your mouth.
Don't chew gum.
Try and make sure you don't have a window behind you as the light can cause shadows and make lip reading more difficult.
If a person is hard of hearing, it is much better for them to have a meeting in a room with good acoustics ie a room with carpet and curtains that does not echo.
Film: with audio : When you pick up a glass, how do you know how tight to grip it?
When you shake someone's hand, how does your arm know how far to reach out?
How do your legs know how to walk? How do your eyes know how to read? How does your mouth know how to speak?
All of these highly complex things come naturally to most of us. All of these things are controlled by signals coming from the brain. There are billions of neuron cells interlinking in the brain like a giant web. The signals are transmitted through these, with each part of the brain being responsible for different things.
For example, reading requires the following brain processes:
- Seeing a group of letters as a sound
- Linking the sound with a word with meaning
- "Seeing" in your head what the word conveys
- Doing all of this at high speed.
Image 1 shows the brain. The orange lines are neuron cells linking to one another. The blue line is where the signal sent along the neurons needs to go in order to process reading (the neural pathway), as different parts of the brain specialise in different tasks.
Image 1 Image 2 Image 3
We probably all have a few dead neurons! Neuron cells die if they do not receive oxygen for more than 3 minutes. Other problems can be in the (chemical) signals being sent, or the neurons not growing properly in the first place.
So as Image 2 shows, it might only take a tiny amount of nerve damage to mean that the most "natural" path to processing written words cannot be used.
However, (Image 3) the brain is very adaptable and plastic, and will learn skills using an alternative way, even if it has to bypass through parts of the brain that specialise in other functions. Sometimes brain damage causes learning difficulties - if the "dead" part of the brain is specialised in processing certain information (eg, reading, speech, social cues) the person has to use another part of the brain to try and do the same job. Physical disabilities can be caused by damage to the brain. You may have dyslexia, be unable to walk normally, be unable to speak, and so on because of damage to the brain, NOT the eyes, legs, mouth etc.
Disabled people - Images: You'll be shown a variety of photos of people. Some of them have degrees, are married, have children, and so on.
All of them have different symptoms. Some can walk, but in a wobbly way. Of those that can walk, some have clear speech, others don't. Similarly, of those in wheelchairs, some have clear speech, others don't. Of those in wheelchairs, some can push themselves, others have very little control over their body movements, and one uses a chin controlled joystick. One person can walk and talk fine, but has academic and social learning difficulties. All of them have different lives and personalities, all of them have different symptoms. But all of them have the same disability.
Cerebral Palsy ( Cerebral = Brain; Palsy = disorder of movement)
Cerebral Palsy is caused by damage to the motor control centers of the developing brain
It can occur during pregnancy, during childbirth or after birth up to about age three. 
Communication The inability to move much, and inability to speak clearly because of involuntary muscle control can result in a child becoming passive (learned helplessness) and, therefore, not reaching their full developmental potential. For many people with CP, their brain damage does also affect areas important for academic learning and the development of social skills, even if only slightly. The brain is extremely plastic, so if encouraged, a child's brain can be trained to use other parts of the brain to get a normal result with these skills. Often this is evident in that someone may have a university degree, but be astonishingly bad at very specific academic skills (eg maths, or following a sequence of verbal instructions). Someone may seem totally intelligent and normal socially, but show clear but slight signs of Aspergers, which can confuse people.
Medical and Social Models of Disability
Medical Model:
u The disability itself reduces the person's quality of life
u Resources should go towards curing the disability, "normalising" the person
u Surgery, orthotics, prosthetics, medicines, genetic engineering
Social Model (1980s):
• Disability is a socially constructed concept, and its definition changes depending on culture, beliefs, place, time, and the environment the person is in.
• Systemic barriers, negative attitudes and exclusion by society (purposely or inadvertently) mean society is the main contributory factor in disabling people
• There is nothing wrong with being different. Eg, deaf people may be quite happy to be unablee to hear, sign language is a valid form of communication.
• The emphasis on normalising disabled people can lead to unnecessary invasive treatment which may be more traumatic than the disability itself. It rarely leads to a full solution, and simply emphasises what the person is "lacking."
The social model of disability is based on a distinction between the terms "impairment" and "disability."
Impairment: the actual abnormal condition of a person, whether physical or psychological.
Disability: the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments.
Causes of Disability
• Development - the embryo/foetus develops in a certain order. If a certain part of the body does not develop fully within a certain timeframe (sometimes a few hours), it never will.
• Medicines, drugs, alcohol, smoking, nutrition, the health of the mother can affect how the baby grows. Eg, exposure to radiation, thalidomide. However plenty of mothers do all the "wrong" things during pregnancy and give birth to reasonably healthy babies. Just because the mother is eating and doing all the right things, does not mean to say that her body is passing everything on to the baby at all times. If the baby is deprived of oxygen whilst in the womb, it will be born with brain damage.
• Genetic - Either inherited, or a spontaneous mutation. On average, we all have 60 mutations.
• Acquired - through accident, illness, or old age. Most disabilities may well be caused by both a genetic predisposition to developing it combined with environmental factors affecting development.
Specific Disabilities
Muscular Dystrophy: People with muscular dystrophy are born looking normal, but their muscles waste away. Without the muscle to support it, the spine curves (sometimes the spine is fused to prevent this, but back operations have a risk of causing paralysis.) The lack of muscle and curved spine causes problems with breathing. Speech becomes less clear because the tongue is a muscle, and when weak, will tend to flop forward. Duchenne muscular dystrophy (DMD) is the most common childhood form of muscular dystrophy, becoming clinically evident when a child begins walking. Patients typically require a wheelchair by age 10 to 12 and die in their late teens to early 20s, though some people with Duchenne muscular dystrophy are now living to age 40 and beyond.
Spina Bifida: It means "split spine" in Latin. The spine does not develop normally during pregnancy, leaving the spinal cord exposed. 10% of the population have "spina bifida occulta," where the outer part of some of the vertebrae are not completely closed, but there are no symptoms. Surgery is performed to protect the exposed spinal cord. Any damage to the spinal cord will result in nerve damage, so people with spina bifida are often paralysed from the waist down, and may be incontinent. Paralysis can vary from not being able to feel anything (you may not even notice you've broken your leg) to feeling pain, or to having enough feeling to be able to walk. People with Spina Bifida also often have the cerebelum (part of the brain) in slightly different place to normal, which interferes with the normal flow of cerebrospinal fluid, and so causes hydrocephalus ("water on the brain"). If the liquid is not drained out by medical intervention this can cause brain damage. It is known that if a woman does not eat enough folic acid (either as a supplement, or in green foods) before conception and during the early stages of pregnancy, the likelihood of the child developing spina bifida is greater.  
Multiple Sclerosis: The Central Nervous System is the Brain and the Spinal Cord. Surrounding and protecting the nerve fibres of the central nervous system is an important substance called Myelin, which helps messages travel quickly and smoothly between the brain and the rest of the body. MS is an autoimmune disorder, meaning that the immune system attacks the Myelin, which disrupts messages travelling along nerve fibres - they can slow down, become distorted, pass from one nerve fibre to another (short circuiting), or not get through at all. As well as Myelin loss, there can also sometimes be damage to the actual nerve fibres. It is this nerve damage that causes the accumulation of disability that can occur over time. MS is very variable, and very unpredictable. Relapse and remission. Symptoms include: Difficulties with balance and dizziness Fatigue - an overwhelming sense of tiredness Visual problems such as blurred or double vision Numbness, tingling or pins and needles - sometimes these sensory changes can feel painful Bladder problems Cognitive problems (problems with memory and thinking) Stiffness or spasms in muscles - sometimes called 'spasticity' Emotional and mood changes Tremor Bowel problems Sexual problems Speech difficulties Swallowing difficulties
Achondroplasia Dwarfism is an adult height of less than 4 feet 10 inches (147 cm). Some people are naturally very small but have no real medical condition. There are 200 conditions which include dwarfism as a symptom, but 70% of people with reduced stature have achondroplasia. This is when the legs and arms are disproportionately short. Achondroplasia can include abnormal bone development (apart from length) and spinal curvature, but generally the problems people with achondroplasia have faced have been entirely due to social prejudice. The condition itself often does not cause many physical restrictions at all.
Problems Disabled people face today in the UK:
Access - lots of places, including public transport, are still physically inaccessible, leading to social exclusion and society seeing disabled people as "others."
Care - care provision depends on where you live. This affects major life decisions - you may find it too risky to move counties to change jobs, or to move in with your partner.
Housing - there is a lack of physically accesible housing to rent. You thus have to rent off the council, but that means you have to live in the area in the first place, and you have to be on a waiting list. This is no good if you need to change location within weeks because of a job offer for example. There is also no way of saving money in order to put down a large deposit on buying a house that is accessible without having your benefits cut. Given that accessible housing (bungalows, modern or more spacious housing) tend to be more expensive, this is very problematic, and generally means that those needing accessible housing are dependant on council housing for life. Housing the most vulnerable people in society in council house areas is not the best way of preventing Hate Crime.
Career - Most graduates are able to move to whichever city necessary to further their career - a job offer is made, and the person finds somewhere to live nearby. Lack of suitable housing, and the time needed to set up care by the local council (let alone the risk of being allocated insufficient care) make this a near impossibility for many disabled people.
Stigma- until disabled people are able to fully participate in society, society will view them as "others." This prejudice affects disabled people's chances of making friends and forming romantic relationships.