Sight impairment - emotional responses

There are many ways to react to sight impairment depending upon when the sight impairment happened, how it happened and the circumstances and personality of the person who has experienced or is experiencing it.

The RNIB on its website describes some of the potential feeling and emotions as being

• Shock and denial
• Anger and questioning
• Helplessness, fear, anxiety
• Sadness and grief
• Depression

Often people have less confidence and are anxious about their present and the future.  Someone I know feels guilty because her husband has to do so much for her, which means that he has had to limit his life. She also feels frustrated. She misses reading a lot and can get a bit stir-crazy as she cannot now go out alone

Oliver Sachs has recently had his book, 'Hallucinations' published. In it he describes how older people who are losing their sight and/or hearing may experience hallucations. They often do not discuss this because they fear they will be judged as mad or demented. It is useful to know that this may be an issue. See this Guardian review of the book.

Impairment and disability do not stand alone - they have huge impacts on a person, their daily living and their mood. It affects the people that they live with and their extended family and friends.

Sometimes we just need to find time to sit down and ask, 'How are you today?' Or be more up front and ask how their sight impairment affects them. And then look at what support the local congregation can offer.

In all our talk of social action we sometimes forget that there may be need right under our noses.

Sight impairment and disability

This post will focus on a specific impairment and associated disability rather than a broad issue like communication.

First something about terminology

DISABILITY is the disadvantage or restriction of activity caused by a society which takes little or no account of people who have impairments and thus excludes them from mainstream activity. (Therefore disability, like racism or sexism, is discrimination and social oppression).

IMPAIRMENT is a characteristic, feature or attribute within an individual which is long term and may, or may not, be the result of disease, genetics or injury and may:

1. Affect that individual’s appearance in a way which is not acceptable to society,
And / or
2. Affect the function of that individual’s mind or body, either because of or regardless of society,
And / or
3. Cause pain, fatigue, affect communication and / reduce consciousness.

This covers people with learning difficulties, physical impairments, sensory impairments, facial disfigurement, speech impairment, mental illness, mental distress.

Impairment neither causes, nor justifies disability; however only people with impairments are subject disability; they may also experience other forms of oppression simultaneously.

http://www.leeds.ac.uk/disability-studies/archiveuk/thomas%20pam/Defining%20Impairment%20within%20the%20Social%20Model%20of%20Disability.pdf 

It is important to understand the difference between impairment and disability. I believe that we all have a responsibility to support those with impairments by making changes to the way that we do things so that they are not disabled by the world that we all co-create.

Sight impairment

From the NHS http://www.nhs.uk/conditions/Visual-impairment/Pages/Introduction.aspx

Visual impairment is when a person has sight loss that cannot be corrected using glasses or contact lenses.

There are two main categories of visual impairment:

• being partially sighted or sight impaired – where the level of sight loss is moderate
• severe sight impairment (blindness) – where the level of sight loss is so severe that activities that rely on eyesight become impossible

There are specific impairments and these include

• Colour blindness - red-green impairment is the most common, affecting 5% of the male population and 1% of the female.  One in twelve people using the web are colour blind. 
• Night-blindess - difficulty seeing in low light. People with diabetes may experience this.
• Cataracts -  these are usually treatable. It is estimated that one third of people over 65 will develop cataracts. Again those with diabetes are more prone. Cataracts make it difficult to see in low light and very bright lights may cause glare.

Key Facts  

• There are almost two million people in the UK living with sight loss. This figure includes those that have uncorrected refractive error or cataract that may be reversed. It also includes around 360,000 people registered as blind or partially sighted in the UK, who have severe and irreversible sight loss.
• Sight loss affects people of all ages but especially older people: 1 in 5 people aged 75 and 1 in 2 aged 90 and over are living with sight loss.
• There are almost 25,000 blind and partially sighted children in Britain. That is equal to 2 in 1,000 children. As many as half of these children may have other disabilities.
• There is a link between sight loss and reduced wellbeing. Over one third of older people with sight loss are also living with depression.
• Two thirds of registered blind and partially sighted people of working age are not in paid employment.
• The number of people in the UK with sight loss is set to increase in line with population ageing: by 2050 the number of people with sight loss in the UK could be nearly four million.

From the Thomas Poclington Trust

Further information can be found here.

The impact of visual impairments

The impacts of visual impairment are many and varied. If we think about our daily lives and the centrality of vision to much of what we do we can see that it affects

• Carrying out daily living tasks - such as cooking, telling if food is passed its sell by date, putting together a colour co-ordinated outfit, cleaning, keeping track of the days and remembering things
• Self-care e.g. cutting nails
• Getting about within the home and garden
• Travelling (e.g. driving and night driving) and following directions
• The ability to work 
• Receiving and giving information
• Communicating in person - much of our communication is visual with facial expressions and body language
• Telling the time
• Shopping
• Meeting people
• Knowing who is talking in a gathering
• Leisure pursuits - reading, watching the TV, crafts, participation in sports etc
• Going out in the evening
• Doing jobs around the home e.g. changing a plug or putting in a new light bulb
• Caring for family and pets
• Dealing with banks and public authorities
• Getting cash and paying bills
• The list is almost endless.

There is also the impact on confidence and mental health, sight loss can be extremely isolating. It can also make people feel unsafe and insecure. There are also issues associated with falls and bumps.

Making changes

If we start with our own congregations and local communities then we need to know who has visual problems and what these may be. Things such as colour blindness are hidden from view but as it is so prevalent it is to be expected that in most of our communities there will be at least one person who is colour blind.

We don't necessarily need to know what issues there are for individuals but we do need to be mindful that existing or future members may well have sight problems. 

Our buildings

So first our buildings - here is some advice about living space for people with visual impairments from a local authority http://www.sunderland.gov.uk/CHttpHandler.ashx?id=11077&p=0 - page 70

Potential health and safety issues must be designed out e.g. preventing electric flexes from trailing the floor by providing ample electric sockets; providing rounded corners where walls meet or at door recesses.

Lighting, colour schemes and tonal contrast, casting of shadows, audible signals and tactile information must also be taken into account. There should be a contrast between ironmongery, doors, door frames and walls to distinguish these clearly; the new Part M requirements of the Buildings Regulations should be considered. Defining walls and floors can be resolved by providing different textures. Different floor coverings can be used to help ‘way finding’ by producing different sounds. Additional lighting can help to identify the toilet and bathing area or work areas in the kitchen, while being careful not to introduce glare into the area.

Avoid shiny surfaces, especially shiny floor surfaces. Non reflective materials, such as matt wall finish tiles and flooring, especially in bathrooms and kitchens, reduce glare. Highly patterned floor and worktop surfaces should be avoided as this makes objects set against them harder to distinguish.

We need to make sure that our lighting is good enough when people are expected to read things or to walk about.

This is a useful publication which covers a range of disabilities but if you search on the word 'visual' it will take you to all the relevant sections.

Meeting people with visual impairments

Here is some information about etiquette - it come from an Open University (OU) page which I think may be disappearing soon hence I have copied and pasted here. As it is about the OU it talks about students.

Many people are unsure of how to communicate naturally with a blind person or how – or indeed, whether – to offer assistance. It helps if you remember the following.

• When greeting a student who is visually impaired, say who you are when you start to speak.
• To shake hands or not? Be guided by the actions of the visually impaired person because they may not be able to see your proffered hand.
• Speak naturally – do not avoid visually descriptive language or phrases such as ‘see you later’.
• Indicate that a conversation has ended or that you are leaving in order to avoid the student speaking when no-one is there.
• You may need to explain the reason for sudden loud noises or laughter.
• Guide dogs are working dogs and must not be distracted or fussed over. Unless you are involved in making an arrangement to accommodate them, they should generally be ignored; eye contact is discouraged.
• It can sometimes be helpful to give information about the physical environment.
• A blind student may or may not use a white cane or stick. ‘Symbol canes’ are usually just held, and their purpose is to advise that the person has difficulties seeing. Long canes are used to check the ground (e.g. for obstacles, steps, kerbs) for several paces ahead. A cane or stick with a red band means the person also has a hearing impairment. Do not move a blind person’s cane without their permission.
• A blind person learns the location of things, do not move them around without letting the person know.

And another short guide

Guiding people with visual impairments

Here is some advice about guiding people with visual impairments

Large print hymns

There should always be large print hymns available. Sing Your Faith - the Purple Book - can be bought as a large print edition. We have found that it is too big to hold and the individual hymns should be taken out for the person before the service starts. I cannot find the link but if you would like to buy a copy contact the General Assembly.

The provision of information

I have covered the provision of information in the previous posting.

Travel and times of meeting

If people stop coming or only come out during daylight hours it may be worth asking why and offering transport assistance. Meetings may be held in the evening and for most of the year this will mean travelling either both journeys or just the return journey in the dark. Certainly in places with a wide-spread congregation or in smaller towns and rural areas most of the travel will be by car and night-blindness may be an issue.

Summary

Sight impairment is a vast subject. The most important thing is to expect this to be an issue for some of our local community and to be committed to making changes to improve their experience of their local faith community. Attitude is key.


Further information

Information about eye conditions http://www.kent.gov.uk/adult_social_services/your_social_services/services_and_support/sensory_disabilities/deafblind_information/types_of_visual_impairment.aspx  

Information about creating accessible websites http://www.cardiff.ac.uk/accessibility/keyaccessibilityissues/visionimpairments/index.html

Cataracts http://www.bbc.co.uk/health/physical_health/conditions/cataracts1.shtml 

Information about churches and visually impaired people http://uk.life.crossmap.com/article/your.church.visually.impaired.people/81.htm - very small font 

Guidance re websites http://www.churchedit.co.uk/website-tips/church-website-accessibility/

UUA guidance re people with visual impairments http://www.uua.org/accessibility/visual/index.shtml

How to guide someone http://www.rnib.org.uk/livingwithsightloss/helpingpeople/meetgreet/Pages/howtoguide.aspx 

Design guidance for the built environment http://www.icipaints.co.uk/support/specifications/colour/accessibility/visual_impairment.jsp - small font

A long list of organisations involved in visual impairment issues http://www.vision2020uk.org.uk/links.asp?section=000100050013

Communication and access to information

For information to be useful it has to be

• Received by the person(s) that you want to communicate with;
• In a medium that works for them; 
• In an accessible format; and
• In a timely fashion.

Finding out about Unitarianism and local congregations/communities

We need to understand how people receive information if we are going to ensure that as many people as possible hear about us. People will find information at a variety of places. The issue here for us is whether we decide to target our promotional material at specific groups. Having a website works well but what about those without access to the Internet? This may be older people or it may be people who have few resources or it may be people who do not like technology.

We can place posters at libraries but this again will only reach those people who go to those places and will be unavailable to large numbers of other people. This is not to say that information should not be at libraries but that it should be available in other places and in other formats as well as the written word. 

It might be useful to talk with your friends to find out how they find out about things and what works well and what might be a waste of time, effort and finance.

Who are you trying to communicate with

There are a group of people that you wish to communicate with - your congregation or a broader group of people who are somehow connected with your local community. Do we know how everyone connected with our local community wishes to receive information? Email works well for many of us but not all of us. Email works for some of us all the time but for others it may only work for monthly updates but urgent communication needs to be done via phone. Or perhaps newsletters are preferred in paper format. 

Is there a list of everyone with their contact details and their preferred means of receiving information? The larger the group the more difficult this becomes. My main issue is with new email addresses when for some reason I cannot get Outlook to get rid of the old ones - so I have to keep a separate file which has all the email addresses identifying the new email address and when it was changed.

Many of provide notices at the beginning of services. Are we sure that people remember these? Do we also need to follow this up with written information - email and in paper format?

Accessible written information

Once people have access to information there is the issue of its accessibility. Up to 20% of the population have literacy difficulties. The reasons for this range from having a visual impairment, having a learning difficulty, having dyslexia, not having English as a first language (this includes profoundly Deaf people whose first language is British Sign Language) and not having learnt to read. It is not possible to give simple guidelines here. The way that information is provided will depend upon its purpose.

However, there are some simple guidelines for written information which can be adhered to. Key ideas are around avoiding the use of jargon; language being simple, concise and clear; the size of font being large enough for the majority of people to read (14 recommended as a minimum); the avoidance of shiny paper (it reflects under light and people with sight difficulties often need a light to help with reading); the use of certain colours - in particular having text and paper colour such that the text is easy to read; not having watermarks or images under text; and a clear lay-out.

See the UK Association for Accessible Formats for further information http://www.ukaaf.org/

Also 

http://www.scie.org.uk/publications/misc/accessguidelinespublications.pdf

http://www.stroke.org.uk/sites/default/files/Accessible%20Information%20Guidelines.pdf.pdf

http://www.saifscotland.org.uk/

www.dcalni.gov.uk/guidance_on_making_information_accessible.doc 

There are also standards for helping to make websites accessible - see 
http://www.w3.org/WAI/

Other ways of communicating

The written word (on paper or electronic) works for many of us but not all the time. Many local communities now do podcasts and the NUF sends out audio CDs of its publications. Others produce audio versions of newsletters and some also create videos.

Many of us use social networking - Facebook and/or Twitter.

The telephone works well - either texting or speech. If you want to communicate something urgently it is useful to have a phone tree - the first person rings two or three people and then they do the same. This helps to take the pressure off one person.

Summary

Sometimes we are trying to communicate with people that we know and sometimes it's with people that we hope we will know in the future. In our diverse world there are many ways to communicate. To do this effectively we need to understand what suits people - it may be different for different occasions. We are usually fairly small groups with volunteers who do an awful lot. This is not about making life difficult for us all but about giving us pointers about the direction we could be moving in.


Further information can be found at

http://www.euroblind.org/resources/guidelines/nr/88




 

Access to both worship and social space

Often people think that access issues are about how people who use wheelchairs can get into, out of and around buildings. But the vast majority of people with mobility issues do not use wheelchairs.

Causes of mobility problems may be because of arthritic conditions e.g. of the hip; muscle weakness e.g. after a stroke or with Multiple Sclerosis; and loss of sensation e.g. with diabetes. Dizziness may also cause people to be tentative in walking - this can be caused by illness and sometimes medication. Poor sight also affects people's ability to walk. Then some illnesses such as heart disease and chronic anaemia may mean that people cannot walk too far without getting breathless.

Depending on the reason for the mobility problem the solution may well be different. For example someone who uses a wheelchair will not necessarily need to park close to the venue but will need parking that is on the flat with space to get a wheeelchair out of the car. People with heart disease are likely to need to park close so that they do not have to walk too far.

Many of our places of worship are very old, often listed, which limits what can be done to make places accessible. However there are some excellent examples of what can be done such as Brook Street Chapel in Knutsford. However solutions are often quite costly.

Accessibility is not just about getting into the building, it's also about getting round the building - through doors and to different floors - or it should lead us to ask if we can have all our activities on the most accessible floor? We are currently writing a Listed Building Permission document asking to remove our pews (not original) of our 1717 building. We have a monthly, shared lunch and other events in the social room which is up two flights of stairs. Removing the pews would enable our worship space to also be used as a social space.

You need to consider the toilet provision and safety aspects of the internal areas. Although safety issues may not strictly fall into the topic of this blog it is worth noting that people may be more encouraged to come to a venue if they think that their health and safety needs are being considered. Carpets are thought to be the safest floor covering as long as they are fitted, not frayed and have sufficient underlay. This may not be the case for stairs but this is another debate. Information can be found on the Internet about reducing falls at the RoSPA website, on their page Accidents to Older People.

Other issues are about making sure that walkways are clear and uncluttered with wires and cables kept safely away from where people walk. Good lighting is also key to helping people move around safely.

English Heritage produced a guide in December 2012 called Easy Access to Heritage Buildings - they say this

These guidelines focus on physical access issues because these often pose the greatest challenges as well as opportunities for historic buildings.

Other issues such as lighting, tone, colour contrast and signing are touched upon, while acknowledging the excellent guidance on these aspects of good access design which exists elsewhere.

I think that if you want to know more about access then this document is a good place to start. 

The American Unitarian Universalist Association also provide useful information - this is their access guide.

As you can see this is a vast topic. To make sure that you get it right for the people who come to your place of worship take some time to talk with them. This may be older people but it may not. Another group of people who often get overlooked are those with children in prams and buggies.

And then as a community commit to making changes to create an inclusive community.