A steel fence makes a clear boundary between properties. Both sides can open and close the gate. If only human boundaries were like this! We who have lost a lot, or all, of our sight, may at first hand over control of our lives to a partner, an adult child, or a sibling, and then have to fight to get it back.
Taking back your adult boundaries In the first years after serious vision loss everyone needs lots of help from close friends and family. After a while, you begin to understand that being a protected invalid is a kind of imprisonment. During medical visits and shopping trips; in cooking and cleaning at home, in bill paying and reading the mail, you realize that you are left out of the conversations and decisions. Your personal control has been partly taken by other people. Whatever your age, claiming your status as an independent person is an uphill fight. It can be easier if you are the householder, but a senior or young adult who contributes to the household is also due her share of choices and decisions.
The power of the sighted world The powerful influence of sight on most people’s thought processes is so great that they cannot conceive how tasks can be done without it. And here are you, maybe still sighted on the inside, having to convince your closest family or best friend that you can do things, when you are not sure you believe it yourself! Preference versus need Your family may prefer to go on as before. No one like to change old habits. But you have a right to an adult life. You need to move around the home without hazards; to find and prepare meals for yourself;to call and email friends and make appointments; and you need to have household tasks that you perform for the family. You need to do these things without having to wait for someone else to come home and be willing to assist you. That is where the damage to boundaries sets in. you may begin to slide into a dreadful dependence on the people closest to you. Persistence is the key You must persist in finding times to talk, and gradually take back control of your activities. Persistence is a real battle for someone like me who grew up with a hole where a strong sense of self should be. It took years to establish our home as accessible for the person who only sees a tiny bit as well as the one who sees plenty. Even now I am always aware that the boundaries must be actively maintained.
The importance of giving back Kids as young as kindergarten understand the importance of giving back to keep relationships with their playground buddies even. I too often ask my husband to sort out some computer glitch without making sure he is not too tired, and without thinking what I can do for him in return. Returning favors and having equal though altered duties and responsibilities will be part of the new normal you work out together.
Negotiating boundaries A crisis is awful, but it is also an opportunity. As you work out solutions together with your family, you will do a whole lot of talking and thinking and then more talking. Slowly you will all grow in flexibility, sympathy, and generosity. Some relationships cannot stand up to the crisis and a separation has to takes place. You and I , the people with vision loss have to drive these conversations because often the sighted family cannot think beyond sighted methods. This is where vision rehab training comes in.
Extra disabilities I am very conscious that people with disabilities affecting their mobility, cognition or other senses may have a tougher time getting more autonomy at home. A family therapist or social worker may help, but it must be someone experienced in severe disability, This takes time and effort. On the other hand the needs of someone with vision loss and other disabilities cannot be passed over. There cannot be a pretense that the vision loss is just a small thing, as can happen with low vision. We have had clients at the Carroll Center whose families started by exercising a lot of control, and who then turned right around. Whatever your level of disability, talking to your family a lot , asserting your right to take decisions, and contributing to the household is the way forward. Please comment on this important topic which I feel I have only begun here.