Reclaiming Adult Boundaries After Sight Loss

Doug White holds the gate partly open in the fence between the Carroll Center and the neighboring property. We were discussing how to reclaim good boundaries after vision loss. Doug comes from Oklahoma. He is married with 2 teenage sons. [A photo like this was posted on Facebook on Sept. 30 but the post was lost.]

 

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.

3 thoughts on “Reclaiming Adult Boundaries After Sight Loss

  1. I watched my daughter Zenetta who has lost her sight to LHON. Go from that person who felt less independent because of her vision loss to now a strong independent women. Who has claimed her life back and continues to go forward in hope. Thank you to the Carrol center for all of the great skills she learned while with your School. You completely helped to turn her life around. She so desires to work again and misses her job so much and driving. Hopefully stem cell surgery will happen and Idebenone medicine will be able to be filled here in the US like in England and the eye drops that are only available in England.

  2. That’s where assistive technology comes in, such as the Scriptalk for reading medicines, which is offered by Wal Mart. Thus, if you have a Wal Mart near you, have the pharmacists search Wal Mart’s Wire and they will see that Wal Mart does offer Scriptalk and have your Wal Mart get it in for you. I just did it within the past couplke of weeks. I took the official first swipe at my local Wal Mart on November 24, 2014 at 2:05 PM. I would also look into the I.D. Mate Quest for bar code scanning for your daughter and reading machines and computers and screen reading software for her to ulse a computer.

    As to mobility, advocate through your town and state for audible and vibratying pedestrian signals and either for more public transportation, or start a movement to get limited PCA services for her to meet the driving needs or get her into some kind of housing unit that is near plenty of public transportation that runs at all hours of the day or night so that she can go to work, or go to school, or go to medical appointments and even enjoy the multi facets of life4. If there is someone close to her in the family that really understands disabilities at all, even if it is a sibling, make sure her relationship is not cut off in anyway with that particular sibling or relative, no matter what your family problems might be, as she is an adult, and by right does have rights to maintain a strong solid relationship with that person and also let her experience dating and other social activities just as normal sighted people do. If these kind of relationships are being stopped, because,of other family member’s problems, there ought to be a law against that to allow for freedom of association.

  3. I appreciate your information in this article. It’s smart, well-written and easy to understand. You have my attention on this subject. I will be back.

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