Personal life management and self-esteem The concept of “our village” Accessible banking as a tool for empowerment Use of volunteers
You all know that both TVIs and O/M instructors contribute to someone learning how to manage his or her life well. Learning how to travel to businesses and knowing the easiest way to get your bills paid is all part of rehabilitation.
In case you don't know rehabilitation teachers also contribute to assisting a person with a visual impairment to live well. Rehab. Teachers are the closest evolution of the blind home visitors I spoke about in a previous lecture and I suspect that there are more rehab. Teachers who are visually impaired then either O/M or TVIs.
Rehabilitation Teachers will teach people how to manage home tasks. These professionals will help someone set up a blind person's kitchen and assist them with cooking. They may also teach someone how to vacuum in a grid pattern (I vacuum in my bare feet) as well as organize his or her clothes.
Rehabilitation Teachers may also specialize in certain aspects of life management such as braille or technology. They usually come into the picture after a person has been through a full rehabilitation program like the one operated by the Carroll Center for the Blind here in Massachusetts.
Obviously all people manage their lives differently and we can't address the rainbow of creativity people use in working out their personal comfort. An example of what I mean is that many people try to lower the cost of adaptive equipment by looking through the Sharper Image and Brookstone catalogues for items which are inexpensive and could be used to support some aspect of their lives.
To give you a feel for the psychosocial aspects of personal life management I am going to discuss banking, shopping, and the use of volunteers. Banking has huge issues of privacy that go with it; shopping has mobility concerns which have to be handled; and using the assistance of volunteers has communication concerns that go with the volunteer relationship.
All personal life management issues relate to an individual's sense of well-being and personal empowerment. In some ways it is much easier to negotiate your needs with an employer because the relationship is already defined by your employment. When matters slide to the personal side of life, the boundaries and issues become less clear and more complicated.
Where personal life and professional life issues regarding blindness get mixed up is in the way a person handles his or her initial rehabilitation. The rehabilitation system has its own definitions for what constitutes a fully adjusted and functional person with a visual impairment. As we have said before the goal of much of rehabilitation is to become independent through employment. Where negotiating the rehabilitation system gets dicey for the individual is when someone does not want to work outside the home or refuses to learn certain self-management techniques like cooking. The most extreme incidence of this is when the American Rehabilitation System runs into a person with a visual Impairment who grew up in another country or culture. Remember that rehabilitation decisions are made in part on the American cultural view of independence.
People from other cultures may understand the use of time, social relationships, and employment very differently than people born and raised in the United States. Here is where it is very important to check in with yourself about what you are expecting from a client. You know your job well and you will have to write a report on your client's progress. It will be very helpful for you to acknowledge that there could be cultural differences between you and your client.
If you feel a lot of resistance from your client it may be because they are resisting some aspect of their adjustment to blindness or that they have cultural taboos which affect their willingness to receive instruction from you. An empowering experience for you may be to have the freedom to get through the airport and get on to a plane without assistance. For a client of yours learning how to speed dial the phone to place a pizza delivery order may be very empowering. This example applies to people born here as well as those from other countries.
I worked with an organization which provides assistance to people emigrating from a country where women have very traditional roles based in the home. I consulted with a young blind woman living in her parent's home. In her culture she would not be expected to work or raise a family. To try to teach her how to travel on public transit by her would be going against her self-identity. Even though we might think that would open up the world for her and that her family was dictating her life to her. Trying to get her to do this would not be the best use of your time.
What this woman wanted to do was learn how to travel to the local corner store and buy things which gave her pleasure. Walking two blocks and asking for assistance in the store was a very powerful moment for her. Even handling money was empowering.
What this story shows is that all people live within a "village." Our villages are made up of the people we are close to along with all those we interact with on a regular basis. When this young woman started walking back and forth to the store her village expanded to include not only her family, but the store clerk, passersby on the street, her neighbors, the postal carrier, and the local police. All that in just a two block walk!
Vision professionals often overlook the "village" aspect of a person's rehabilitation. It is addressed to some extent, but only in so far as to reinforce how to ask for assistance. This is great, but I don't feel it goes far enough.
Remember that we talked about visual impairment as a "communication disability." Those of us with visual impairments have to communicate constantly in different Ways to get our needs met. When we change our communication patterns regarding our disabilities our entire system of support changes as well. Please ask me more about this if you are unclear about what I mean. This concept is very important. Since there is such an emphasis on being independent in this country constantly asking for assistance can be a drain on the blind individual because it can lead to feeling dependent all the time. I rarely get through a day without asking one or two people to help me with something. If I wasn't balanced in my feelings about needing assistance I would be exhausted all the time.
So here is where the village concept comes into play. We forget that everyone wants (not needs) assistance in their lives. What is often different for blind people is the sense that we need more assistance than sighted people and that we don't always have any choice in how the assistance is provided. My point is that for many blind people asking for help means that he or she has to give up a measure of self-empowerment because the helper is in charge of the Experience. Someone with a visual impairment can only get as much help as the sighted person wants to give and the blind individual's choices may feel limited.
Are you getting the flavor on the feelings of dependence and lack of choice? Trust me this is big in the blind community. It is one of the main reasons low vision people hide their limited sight. The more their vision loss becomes obvious the more dependent they may feel they appear to others.
Now here is a solution that I came to for managing my own life. First of all I give myself permission to have all the assistance from the world that I want. Then I decide how I am going to receive this assistance. I can pay someone to assist me (blind people don't do this too much because of not having a lot of money) or I can use the services provided by the local Commission for the Blind or I can ask for assistance from my village.
There is no right or wrong way to provide myself with the supports I can use to live well. All that matters is that I feel in charge of my life and I am moving forward with the things I really want to do. Let's go straight to the village for a minute. If I am constantly asking for help then I may feel very disempowered because I always have to be helped.
To address these feelings here is what I do. When I ask for assistance from my village I recognize that I can make a contribution to my village which is equal to the assistance I am receiving. If someone is offering me sighted guide assistance crossing the street I give them some attention. Many people who offer help have some kind of concern with blindness. It may be something as simple as they are religious and they feel they are doing a good deed.
If I am the vehicle for the good deed then I have contributed to their life as equally as they contributed to mine even though it is in a different form. The catch to this is not to manipulate people into giving assistance. If I talk with someone who is helping me because they are lonely and just want some human connection then I has contributed to them.
Also many people tap into their own fears when they see a blind person on the street and agreeing to have them assist me gives them an opportunity to release their fearfulness. I an always excited by being with my village because I get a lot out of it. The main reason it is important not to manipulate someone into helping you is because you can cause them to feel disempowered.
Many people feel guilty that they have a good life. Sometimes blind people attract those who are embarrassed by the fact that their life is easy for them and they don't know how to reconcile their discomfort with their comfort. It is very common for disempowered people to tickle those who are seen as empowered into feeling uncomfortable.
In order to get assistance, I don't judge this because people do it to secure their own survival. I just feel it is a no win situation because both the sighted person and the blind person are in danger of feeling disempowered.
Now let's go for some examples. Banking used to be a very big drain on me. I had to give up a lot of my privacy in order to have help managing my finances. I had volunteer readers who went through my bills, check book, and bank statements. Several people knew how much money I make and what I spend it on. Also, if my readers were sick or on vacation I often paid bills late since I had to have someone write out the checks and address the envelopes.
Going to the bank was also an issue because the ATM machines had braille panels on them, but they were useless in assisting me with the machines. All the ATM machines operate on a changing screen so blind people had to memorize the button sequence in order to complete a transaction. This is a lot to remember on a regular basis.
The two biggest events which increased the personal empowerment of many blind people were the development of on-line banking and accessible ATM machines. On-line banking came a few years before the ATMs. Granted I had to be a good computer user, but since I am a good computer user the on-line banking was amazing. The first internet banking systems were not fully accessible, but with a little tinkering I could use them. Now they are pretty much accessible.
I got privacy and control over my money. I rarely pay bills late now and none of my volunteers look at my check book. The advent of the talking ATM machines also increased my ability to handle my money more easily. The more important aspect of the talking ATMs is that they Are now part of the fabric of society and people seeing blind people using the machines. They have crossed over from being a curiosity to a regular part of daily life.
The only funny thing about the ATMs is that other people can use them. I mean the talking part of the machine. Anyone can ask for an earphone and use the Machine. Some people may find it helpful in navigating the screen and children just love it. I think the use of these machines is marketed only to the blind community. I hope their use expands.
Shopping is always an interesting encounter with my village. I am friendly with many of the clerks in the stores where I shop and they often remember my favorite things. From a social perspective I try to go into stores in which I want assistance when the clerks are not busy. Sometimes I have to remember that I can go in even when the store is busy so that I don't wind up discounting my needs because I want to give the clerks a break.
All stores are legally mandated to provide assistance to people with visual impairments. That is true in fact, but doesn't always go smoothly in reality. O/M instructors are trained to teach a person to be able to travel to a store. They also may provide some orientation to the inside of the store so someone can locate the cash register. This form of instruction is predicated on the belief that a person with visual impairment will then request assistance to get their shopping done.
Asking for assistance works well in some stores and not in others. I stopped shopping in the nearest grocery store to me because the manager always had a hard time finding someone to help me shop. That particular store worked on a skeleton staff and most of the people did not speak English and didn't know the stock. Often I had to wait twenty minutes to get assistance. Being me I stopped going there and found a better place to shop.
The one area of shopping that almost all people with visual impairments have a hard time getting assistance with is shopping for clothes. The system of going into the store and asking for help from a clerk breaks down really fast in clothing stores. Not because the clerks are unwilling to help, but because buying Clothing is very subjective. I never ask for assistance from store clerks. When I am shopping for clothes I have a volunteer or friend with me.
There is a store I shop in where the clerk would like to help and often has time to assist me. The reason I don't have her help me is because she has very strong opinions on what colors look good on me and they are usually not the colors I like.
Even shopping with a friend can be tricky because our friends and families also have definite opinions on what looks good on us. My way of addressing that is if I am not absolutely sure I like the outfit I find out what the return policy is of the store before I buy the garment. Then I leave the tags on the outfit until I have someone else take a look at the garment. If three people agree the outfit looks great on me then I usually keep it.
My clothing story is designed to show you how self-esteem gets into life management issues. I have enough self-awareness to know what kinds of clothes I like and have the communication skills to attract the right information to make a good choice. My example also illustrates how complicated simple things like shopping can become for someone who is blind. Internet shopping is a good solution for blind people who can use the net.
Having volunteers to help accomplish personal life tasks can be the fastest way to get things done. The volunteer relationship is an interesting one from a psychosocial perspective.I have several volunteers. Three of them I see weekly and three of them are less regular. These people assist me with everything from reading my mail, shopping, small repairs,putting up holiday decorations (I am very fond of twinkle lights), installing software, and many other tasks.
There are three places blind people can find volunteers in Massachusetts. The Massachusetts commission for the Blind, Vision Community Services, and Match-up. Match-up is local to Boston. The other two are state-wide. It is easier to get someone to help out in your home rather than run errands. People willing to shop or run errands are much harder to recruit. The general belief is that people are hesitant to go out with someone because they don't want to be responsible for their safety. I am not sure how true that is in the climate where volunteerism is dissipating.
What you do is put in a request and wait. There is no way to know when you will be sent someone to assist you which can feel disempowering right there. The talent required to work with volunteers is in being able to balance what you want to get accomplished while attending to the needs of the volunteer.
It is very easy to feel like you are not in charge when working with a volunteer. Basically because you are not in charge of the experience – the volunteer is. Since the person is giving their time you have to negotiate the whole relationship with them. The volunteer is in complete control of the relationship. They tell you when they want to come, how long they want to stay, and what they want to do.
This is all fine as long as the one receiving the service doesn't re-arrange his or her life to accommodate the volunteer. Accommodating someone else's schedule while getting your needs met is not always easy. Sometimes I will see a volunteer when I am tired because I know that If I don't take the opportunity before me I may not get things done that week.Volunteers are also a little different from employees because you are not as likely to speak to them about their behavior. I appreciate my volunteers, but I recognize That this is not a friend relationship. Many blind people try to make volunteer relationships into friendships and that usually does not go well, even though it is possible to be with someone in a friendship pattern. The only volunteer I ever became friends with worked out because she was no longer volunteering for me when we started hanging out as friends.
I think the potential for friendship is in a lot of volunteer relationships, but since the relationship is based in giving assistance to someone I can understand why a volunteer might not want to enter into a more personal connection. Since many people view friendship as a giving pattern, getting closer to someone may mean that the volunteer would have to give even more than they already are.
Again, volunteerism can amplify feelings of dependency. My solution is the same as for my village. I recognize that spending time with me is fulfilling needs for the other person and there is nothing else I have to do but be myself. Receiving assistance from volunteers is a gift. Accepting and knowing that you don't have to do anything but be yourself can be very freeing.
Pretty much everything I have covered today plays into the rehabilitation or medical model which says that people with visual impairments are limited people without freedom or income. The charitable model is also a big player in the management of one's social life. Museums, theaters, and concerts are often financially discounted to make them affordable. Some places offer discounts to anyone with a disability and others offer discounts specifically to the blind community. These programs are developed partly to make expensive social or recreational events more affordable as well as provide an opportunity to reduce social isolation.
These programs are wonderful and I take advantage of them occasionally. What I wonder though is if there are any subtle messages being telegraphed through the blind community as well as the larger village community about blind people.
There are all sorts of things to think about, but this is enough for now.