WHY ARE BLIND PEOPLE SELFISH?
This is a provocative title for an essay that I was asked to write as a result of a conversation I had with a professional, to the effect that blindness has psychological as well as physical consequences. He agreed with this and wanted further information so he could more easily understand what it is like to live without sight. The following is my attempt to help him and any other professionals who work with us to a greater awareness of our needs. It is not a long essay and the title was chosen simply because blindness is a state that can narrow the world, does make people egocentric if they are constantly required to talk about one aspect of themselves to the general public who ask questions of a very personal nature when one is innocently going about one’s business so it’s like being famous without the advantages of fame. When accompanied by other disabilities and experienced with little family support, blindness will inevitably make one’s life narrower, proscribed, difficult and will often mean it becomes more rigidly routined as the person seeks to maintain maximum control over a minimalist life. Little things become irksome and assume a greater significance than they may otherwise do.
THE FUNCTION OF SIGHT.
Eyes are the umbilical cords that connect us to the world. They transport us from the “island” states in which we would otherwise live. They help us maintain ease of travel, warn us of imminent danger, provide social cues when interacting with one-another and give us continuous connection to our environment. They allow us to understand and interpret the emotions and intentions of strangers and give us an image of our changing selves as we go from birth to death. They reflect the warmth or lack of it from the eyes of others as we maintain eye contact with them and are therefore two of our most important organs.
WHAT HAPPENS WHEN THE CORD IS BROKEN?
Only a small percentage of blind people are totally blind, being without even light perception. Sight loss ranges from partial vision through to total blindness and its effects differ according to when its onset was and the degree of sight lost. Often blindness is part of a package of disabilities that includes autism, deafness, learning difficulties and back problems, cerebal palsy and for this reason a one-size-fits-all approach to it and people is inappropriate.
One could say that there are three disabilities under the umbrella of blindness for it is a totally different experience for those who have seen to go blind. They will have a visual understanding of the world and a poise not developed by the congenitally blind. They will not develop mannerisms such as rocking, eye poking, hand flapping, spinning round or rolling the head as will those who have never seen. Those who have never seen will on the other hand have no physical readjusting to do and those of us who are older, before the curse of health and safety legislation was visited upon us, will have learned how to cook, make hot drinks, and therefore have developed a more “can do” than “can’t do” attitude which is more prevalent today. Our need for care givers comes much later than it will and is doing for those of a younger age who carry with them all the misconceptions about what is possible because of the over protective attitude of society. Sometimes the same misconceptions surround those who have lost their sight, some of whom will believe their lives are over and that precious little can be done without seeing how to do it. For someone like me, dressing to my taste is virtually impossible as I have no visual imagination or colour sense or conception of colours. I had emotional adjusting to do as an adolescent as I was fast becoming aware of myself as different as distinct from special. Everyone wants to be special whereas nobody wants to be different in ways they do not choose to be.
THE PSYCHOLOGY OF BLINDNESS:
Just ask a sighted person what it is like to wake up to a dull day every day or how they would feel about living in a completely concreted-over landscape. Ask them if they’d choose an ugly disfigured spouse and have a garden filled with junk rather than flowers. Most will tell you that all the above scenarios are abhorrent to them. They would describe dull days as being psychologically bad and depressing. Blindness without light perception is the same but mostly because of the restricted mobility it imposes. I cannot go for a brisk walk in an unfamiliar place. I cannot easily dispell feelings of anger by throwing the china that I then couldn’t see how to clear up. The unfortunate consequence of that is that an innocent question such as: “What are your plans for the weekend” or “did you have a nice weekend”? Can result in an abrupt answer because of the frustration felt by those of higher intelligence who often have to mix with those of lower intelligence or adopt a solitary default position as an alternative to that. Lack of eye contact discourages others from getting to know many blind people as does a miserable expression which is unwittingly assumed on the face of a blind person who is not in receipt of outside stimuli in the form of a book to read or a conversation had with someone while waiting to go into the doctor’s or when sitting in a café.
THE POWER STRUGGLE:
The dynamics of relationships are rooted in resiprocity and power. A sighted person attending a church or a playgroup with their children will often become involved with flower arranging or cleaning the church, babysitting another parent’s child in return for help given to them in the name of friendship. Even if a blind person has children, they will be seen as the parents’ carers no matter how young they are, and the blind person would never be asked to babysit unless the children belong to someone whose relatives may have been blind and it’s likely the blind person will be seen as the recipient, rather than the potential giver of help. This means that relationships are always unbalanced, harder to start or maintain and not based on assumed equality between potential friends. If the blind person is musically gifted and belongs to a church, he or she may get to play the organ and the dual image of the moronic invisible blind person on one hand and the genius on the other, as maintained by the sighted, persists and furthers the stereotype of the musical prodigy that was and is Stevie Wonder.
The other kind of power battle concerns the professionals who work with blind people. Some are fantastic people who are dedicated, empathic and kind but many are not and certainly not everyone is altruistic. Though many blind people are difficult to work with, those who have genuine concerns about bad practice and who raise them have the injustice of substandard help and care being compounded by victimisation once they have blown the whistle on the offenders who often are either removed to other places where they can repeat their bad behaviour or they remain where they are, free and able to bully and subtly intimidate those they do not like and it’s all too easy to victimise those with no families to stand up for them once they know about what is going on. One provider of bad service can then jeopardise the relationships the client may make with other service providers by prejudicing their opinion before they meet. This means you do not start off with a clean slate, cannot do without the help so have to continue to receive it from those unwilling to give it with a good grace as you cannot shop around as help is provided by few especially specialist help, so either you say nothing and continue to endure or say something and things worsen. The fact that you cannot win fuels resentment even more and causes a deep mistrust of those who see, possibly to the point of paranoia and means that you may do as my friend did, namely see sighted people as functionaries which is just as insulting as it is for them to see you as invisible and moronic. The resultant accumulated damage, often begun in childhood when parents tell you that you are the booby prize in life’s raffle and ending in bad treatment in adulthood, makes you less attractive to know as a friend, have as a client and compounds the sense of isolation that blindness causes in the first place. A bullied sighted person may be able to find another job even in these economically straitened times and a spouse may be able to escape a bullying husband/wife but one cannot become “unblind” or lessen their need for help from those who see and it is galling to have to ask for that help from people you know dislike you or from a group of people who have among their numbers, some who have denied you employment, a chance to do worthwhile voluntary work, for no other reason than that you are blind and they think you pose a health and safety risk.
WHAT TO DO AS A BLIND PERSON:
However hard it is it is essential to acknowledge good practice, just as it is to see each new sighted person as a clean slate. It is not right to play the “blind” card by making them feel guilty for seeing, correcting them when they use visual terminology such as “did you see the TV last night”? By saying: “No. I heard it” and it is not right to emotionally blackmail people into submission in an effor to make them do things for you that you should know how to do or learn to do for yourself if possible. Your aim should be to remain as independent as possible for as long as possible, only asking for help with the things you really cannot do. You should not allow people to see their rights as your privileges and you should challenge them when they call you “aggressive” rather than assertive when you politely insist on proper and fair treatment. If you know you are feisty and assertive then admit it and understand the reasons why but aggression is normally only a fair description of you if your words are accompanied by violent threats or actions or are of a violent and threatening nature.
WHAT TO DO IF YOU ARE A CARE GIVER OR OTHER PROFESSIONAL.
The relationship between you and the client is contrived and is an artificial “friendship” borne of the client’s needs, not desires and not based on shared interests or experiences unless the client has been sighted and was a carer or once did a job that you have done or unless the client has a family of creation (sons and daughters) as you have. It is possible that a client with no family either of origin or creation feels rootless and alone in a world full of couples and families on one side of the fence and all those without on the other and it’s on the other that they will be and feel themselves to be. Abnormal circumstances produce abnormal reactions so times like weekends and Christmas, sometimes looked forward to are often seen by clients as times to dread especially if they have no prospect of company that they would want because friends are away, families are together and they haven’t been invited to an exclusive gathering. Look out for signs of depression or unhappiness then and don’t be tempted to encourage the person to “cheer up” but accept them as they are. If they are at the beginnings of trusting you by telling you how hard it is to trust people because of past losses that may impact differently on them because there have been so many and because there is not the support network to help them through as there may be for you, it is insensitive, not to mention crass and counterproductive to say: “But we all have losses Freda”! All that will do is to make them clam up, rightly conclude that you have no empathy and do not understand how their shoes pinch. If you must reply it’s better to say: “I can’t pretend to understand how it feels to be in your shoes but I am glad we had this chat as now it will help me to do so as best I can”. That is at least honest and if you don’t feel you know the client well enough yet to give an answer that will not upset them then just listen. You can even encourage them to talk about the last person who did your job but who is now lost to them much as you would allow a bereaved person to talk about a dead loved-one. They may be your first blind client but you will probably be the next in a long line of itinerant carers and professionals, as well as lost friends that have suffered brain tumours that first blinded, then returned to kill them and lost parents and siblings.
It probably is not easy to work with blind people and I cannot put myself into the shoes of a person struggling not to offend, to do the right thing, to remember to put everything back where it was before it was moved and to enter what is for you foreign territory. All I can say in conclusion is that the golden rule applies to all relationships, be they contrived or naturally occurring. We all need to apply it to each other and if we do we will all be satisfied – Us with the service we receive and you with the service you give. In one sense it does not matter that we don’t know what it is like either to see or to be blind, to be a care giver or not. We all know how we would like to be treated and whether we would choose to have as a friend, someone who would say: “But Freda it doesn’t only happen to you it happens to us all” if we were describing the loss of a valued friend or helper or a mother or other relative. Most of us would feel crushed by remarks like that. If you feel such a remark would make you feel dismissed and that you should just soldier on and bear it then don’t make it. Though empathy can be examined for and sought in a potential care giver, it cannot be trained into you, it is in the heart and is innate. Just as some blind people come into the world spiteful and would be so whether they were blind or sighted, others have had their natural kindness reduced by rejection of their unique abilities by people who fail to see beyond their blindness and that, together with restricted opportunities, mobility, lack of companionship with like-minded as opposed to like-blinded people can sour them. We may be linked by blindness but we are separated by intelligence, differing interests, family experiences and support, hopes and dreams for the future which may remain unrealised and saddened when they are not. As sighted people, you are the same, linked by sight and separated by the above. Yes we share a common humanity but to be in a minority, struggling to keep afloat in a fast-flowing river whose tide runs the opposite way to ours has taken its toll on me as it has on so many other blind people but your sensitive support and help, given in a practical and empathic way can do much to ease the load.