[nabs-l] question about independence

Tue Mar 4 05:25:34 UTC 2014

Greetings.

Let me apologize in advance for any errors as I used Siri to produce this message.

I have been hesitant to comment on this thread because it is so complicated.

I think someone's level of actual independence has to be assessed based on behavioral patterns rather than incidences. If we are just talking about blindness skills, there is a big difference between somebody who occasionally takes a human guide or someone who takes one intermittently or situationally versus someone who takes one on such a regular basis that they do not ever move on their own volition. That can be said for any task of independence. If an individual hardly ever does something on their own, it might be rightfully presumed that such an individual may need further training.

If we are talking about personal choice, it can be said that a person is independent to the extent that their personal choices stick. Also, Dr. Jernigan adds that independence is also a function of how much inconvenience is involved for the self and others. Sometimes, it is more convenient to do something on one's own. Sometimes, it is more convenient to get help. Sometimes, helping another person is convenient for someone. Sometimes not. These things have to be negotiated on a case-by-case basis.

Then, there's the issue of identity. As a community, people with disabilities tend to prefer that the outside population sees us as autonomous. We also want to see ourselves as autonomous. Whether you take a human guide  most of the time or choose to walk on your own, this thread seems to bind all of us. I think personal choice is wrapped up in this concept of autonomy.

Here is an issue often overlooked by the disability community even though it is often of central focus. Boundaries. I have been around a while and have noticed that people tend to be most upset by potential helpers when some helper violates a boundary. For instance, when a sighted person insists that a blind person needs help, when a sighted person grabs a blind person, when a sighted person tells a blind person something the blind person already knows, etc. I think most people would find themselves equally annoyed or they in our place. In fact, they often do. How many of your cited friends are annoyed by backseat drivers? How many sided people are annoyed and frustrated by overbearing parents? The reason why these things are so annoying is because they interfere with a sense of autonomy and personal choice. Also, people do not like to be messed with when they already have a skill required to perform a task. Does any of this sound familiar? It should be. But for those of us with disabilities, the problem is compounded by low expectations of what we can do. These expectations are both internal and external.

Negotiating the topic of independence is tricky. I think this is the case for most anybody with a disability no matter what type. On one hand, we want to honor the fact that we are capable people with a life experience as rich and meaningful as someone else. We believe that we can contribute to society and we want the opportunity to do it on our own terms. At the same time, we want to honor other people's goodwill. We don't want to be seen as a people with a chip on their shoulder. In my opinion, this is a very difficult situation to be in. We are all human and we will never get it right all the time. To expect otherwise is ridiculous.

I'll tell you what I tell my students about the concept of independence as it relates to all the topics discussed above.

Independence is your ability to make choices and to have those choices stick. The most independent of us have a variety of options for ways to do something. Every situation is different and every situation will dictate the manner in which something should be done. Sometimes, it is best to get help. Sometimes, it is best to do something on your own. You have to be equally prepared to do either. If you are not, then it can be said that your choice making ability is limited. If you find yourself limited, then it is worth your while to learn a set of skills for using help effectively and working on your own.

If you find that help is required, the best way to negotiate the situation is to view the other person as an extension of yourself. In other words, you need to be in control of what help you receive as only you will know how someone else's help will best accommodate your needs. This technique also ensures that you are not defined by the help you need, but are defined in instead by the contributions you make with and without assistance. It is important to remember though, that the people who help you are human beings. I find that whatever you can do to break the ice helps to alleviate discomfort and can reduce the amount of awkward between you and the person who helps you. This eliminates all kinds of problems including boundary crossing. When I get help, I make sure to be the one who initiates the interaction. I introduce myself, smile, and make pleasant conversation that has nothing to do with my blindness and the help I need. If at all possible, I try to focus on the individual who helps me or uncommon topics we can both discuss. If there is any information that I can provide that would make there helping me easier, I provided freely. For instants, if I know where a product is generally located in a grocery store or on the shelf, I will provide that information to make my helpers search easier. If there is something that I can get for myself well my helper grabs something else, I will if it means making the experience faster. A lot of folks who have helped me say that they learn from me about where we are and what we are doing that makes their job better in the long run. I feel that that's a pretty even trade for the help they give me.

If you prefer to work on your own, that's okay too. Dealing with unwanted assistance can be tricky and none of us get it right all of the time. I think we tend to believe that an interaction with one of us will set the tone for how a sighted person feels about all of us. I have learned to do  away with this notion as I find it puts more pressure on me then is helpful and necessary. I also find that believe myself to be an ambassador for the blind creates an invisible audience. Communication research tells us that people tend to respond more negatively to face threats when there is and audience. Face threat is any action that causes someone to feel like their sense of identity is being threatened. In this case, autonomy is in question. Remember that autonomy is not whether or not someone gets help, but whether or not somebody is able to make a choice between getting help or not getting it. No matter how we handle the situation, the reality is that sometimes, we can only do our best and except it. And sometimes, our best may not be a shining example of what could be possible for all kinds of reasons that have nothing to do with blindness.

Just as we need to get rid of the notion that independence means let's roll and dependence all of the time, we also must do away with the notion that the individual who refuses help has a chip on their shoulder.

And one more thing, it's important to recognize that, though the Federation has a philosophy of independence, we all express that philosophy differently. That said, I would be particularly careful about stereotyping all Federation us as dogmatic in their approach to independence. I have found this to be less so than not.

Respectfully,
Jedi

Sent from my iPhone

> On Mar 3, 2014, at 12:45 PM, Carly Mihalakis <carlymih at comcast.net> wrote:
> 
> Good morning, Antonio,
> 
>        I'm glad you shed that chip from your shoulder, too! In my experience, sighted people are most impressed by what they see and  not so much by what someone is lecturing them about regarding their particular special interest. So, I tend toward yes, accepting more help from sighted people than probably do you and your Federationist peers.
> Also, Antonio, in the end, someone's actual means of achieving don't matter to l' Sighty. I feel the Federation loses sight of this, as well. Ol' Sighty cares not how we do something. All that tends to matter to them is that we do it. If you have a sighted person help you, then so be it It doesn't matter, in the end.
>   It's okay for me, though. I am a people person, finding it much more fulfilling to interact with people than try proving some usually abstract point about what blind people are able or unable to do. In this way, blind person can just recruit a shoulder (I walk sighted guide simply by grabbing a shoulder. This way, you glide seamlessly over that awkward moment in which ol' Sighty and you try to figure out who is supposed to grab who's arm.) I appreciate how you said people need to travel in whichever way works best for them. It is not only about blinks. There are others inhabiting this earth, with their own special interests and philosophies. I feel like those wrapped up in Federationism lose sight of this reality.
> loving, for today, Car08:58 AM 3/3/2014, you wrote:
>> Our opinion matters a great deal, since we are a Community that talks about independence as a core of our philosophy.
>> 
>> What I think about another's approach to independence, and how they deal with the public will very likely determine how we interact, how close friends we are, and how highly we might regard that person in our social groups.
>> This is an interesting question that bears no right answer. We may choose to refuse help in such a way that puts people off. That is okay at times if that is how we feel at the time, as Arielle said. If I feel like taking someone's arm to deal with navigating through tight quarters, that is my own call to me. Instead, if I feel like dealing with the same environment on my own, independently if you will, someone will have a perception of that.
>> 
>> As a matter of fact, someone will have a perception of everyone know matter what they do. If one day I want to deal with airports on my own, and another day I choose to accept more assistance, there is nothing wrong with my approach on either day.
>> 
>> If sometimes a stranger grabs me by the jacket to guide me down the stairs, you bet I will do something about it. I don't want to lose my footing, and tumble down because this person is dragging me over. I may not want help, need help, and so I will refuse it, turn it down, and will do so very firmly.
>> 
>> If someone offers me to guide me by the cane, yes by the king, pulling it I had of me, I may turn this scenario into a great opportunity to educate someone about proper techniques of sighted guide.
>> 
>> Most likely I will ask to follow the person by the elbow not because they need to learn something, but because I need to get somewhere, and quick.
>> Most times I will be put off, and endangered by losing control of how I interact during travel, and keep myself safe.
>> 
>> But there have been a handful of times when I was cool with traveling a short distance guided by the cane direction.
>> 
>> If there are no steps to worry about, and I am not worried about safety, I will be guided by Cain.
>> 
>> Mostly when this happened, there work some cultural differences between me, and the guy.
>> 
>> Consider the Muslim woman who could not have contact with males. She offered to help me, and explained her situation. She guided me by Cain, and I got to where I was just fine. And she wasn't in any spiritual trouble from that.
>> 
>> We are always being observed by the public. How we behave matters. How we feel very safe from time to time, they today, situation to situation. It changes with time also.
>> 
>> But even if you have a day when everyone is doing what you think is the right way to interact with the blind, you could be annoyed with something or another.
>> 
>> I remember one day traveling in the city, and being asked over, and over, and over by different people at different places at different times if I needed help getting somewhere. I wasn't sure how to think about this after the 20th time. Do I look that lost?
>> 
>> That day, I had the choice to be stern, say no, and turn away from help, or I could smile, say no, and continue on.
>> 
>> I'm glad I chose to take the chip off my shoulder that day.
>> 
>> Antonio
>> 
>> On Mar 1, 2014, at 2:15 PM, Jamie Principato <blackbyrdfly at gmail.com> wrote:
>> 
>> > If you didn't need his help and didn't really want it, then what you did is fine. Why does our opinion matter?
>> >
>> > Sent from my iPhone
>> >
>> >> On Mar 1, 2014, at 8:45 AM, Mohamed <malhajamy at gmail.com> wrote:
>> >>
>> >> Hi all, I have a question about independence.  Earlier, someone brought up the what is independence thread.  That reminds me of something.  So, this friday, I was in a cab.  I go to school by taking cabs.  So, this driver in  particular, he wanted to help me  with practically everything.  Putting my stuff in, opening the cab's  door, getting into the school, everything.  This is what I'm wondering.  When is it best to not accept help, and when should I ask for help? In this situation, should I have accepted help? Or should I have done what I did, and politely said no?
>> >> Thanks.
>> >>
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