Category: Random Ramblings

By Laura Legendary

 

The only thing more devastating than enduring a disease or disabling condition is when it happens to someone you love, especially your child. For me, growing up while going blind might have been an altogether different experience, and I may have become someone very different than who I am, if it were not for all the things my parents did to give me a full life. As a blind adult, I consider myself among the most fortunate of daughters. A disability does not have to be a barrier to your child’s sense of self-esteem or her ability to live her fullest life. You may be grappling with feelings of guilt, anger and frustration, unsure where to turn. Below are a few coping strategies that may help you to find strength and the support you need.

 

Educate yourself. Learn everything you can about the disease or disability. Learn the vocabulary necessary to effectively communicate your child’s needs. Remember, knowledge is power, and if nothing else, you’ll be able to quickly ascertain the depth of education or experience a professional may or may not have with respect to your particular set of circumstances.

Get more than a second opinion. Don’t just consult more than one doctor; consult more than one type of doctor. If, for example, your child is having difficulty with assimilating information, don’t conclude your fact-finding at your pediatrician’s or general practitioner’s office. You may want to see a specialist, a neurologist, or even an ophthalmologist. Sometimes a child can be too quickly “diagnosed” by school officials as learning disabled when in fact the child may actually have a vision problem.  Consulting several doctors will help to ensure the most accurate diagnosis possible.. 

Keep up on current research. Be careful, however, this may prove to be an emotional trap for a loving parent who can become obsessed with finding answers. It might be a good idea to assign a family member or friend to be the “go to” person when it is time to seek new information. This point person can be the one to surf the net, subscribe to newsgroups, visit parent’s forums and read medical journals or science articles on the latest research. Delegating this task will allow you to focus on quality time with your child and focus on his or her developmental needs.

 

Maintain a separate identity. You are not your child and this isn’t happening to you. The disease or disability is happening to your child, and don’t forget that. As tempting as it is, you cannot take that specific burden on yourself. Financial burdens, housing burdens and transportation burdens – yes, those can be yours to shoulder, but not the disability itself. If able, the child must learn that, ultimately, he will be his best advocate. Empower him or her as early as possible. As much as you may desperately wish to relieve your child of that which you believe he surely must be suffering, you cannot. In fact, he or she may not be “suffering” at all, and projecting that onto your child does him or her a terrible disservice. Your child may not be able to comprehend the gravity of the situation, but a child has no difficulty grasping your responses to it. Try not to allow your grief and anxiety to define your child. The best thing you can do for your child is to teach self-sufficiency, encourage resourcefulness and advocate self-determination.

 

Don’t take “no” for an answer. No one is a better advocate for your child than your child or you. Do not allow anyone to speak for you if they do not represent your views, needs or best interests, or those of your child. Build a team of trusted professionals, cheerleaders and supporters.

 

Give yourself a break. Avail yourself of professional, peer or group counseling. You may feel alone, but you’re not. Let others help you. Allowing another person to help you can be a tremendous gift for you both. Underestimating the extent to which you feel overwhelmed can be detrimental to your decision-making ability. Take good care of yourself, so you can be the best caregiver for your child.

 

 

Copyright 2010 by Laura Legendary. All rights reserved.

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This article was originally written in 2005.  it has been the basis for many of my presentations over the years.  I wrote it in a fit of frustration one afternoon, and it was one of those rare times when the entire article came to me all at once, and I wrote it in one sitting. 

You Don’t Look Blind

By L. Legendary

Nearly everywhere I go I am forced to contend with the result of widely-held beliefs about blindness. Often, I am required to explain or justify my actions or motives. Whether I am deflecting another’s idle curiosity, overbearing control, resentment or simple ignorance, I am frequently amazed by how little is really understood about people with disabilities.

For each of these encounters, I endeavor to educate others as to the myths and stereotypes about blindness perpetuated by our media culture. Most of the time, my explanations are met with surprise and incredulity. It seems as though few want to hear the truth because the myths are much easier to believe. Perhaps the misperceptions are simply more palatable because for some, the reality of a disability is intolerable. Many hold to the “I’d rather be dead than disabled ”viewpoint. It seems that ascribing some magical quality to those with disabilities makes us easier to accept.

The single most often repeated myth about blindness is the belief that we have a superior sense of hearing. Variations include: “People who are blind have higher attuned senses,” or “Blind people are more intuitive,” or “Blindness gives you a kind of sixth sense as a way to compensate.”

Let’s clear this up right now. People who are blind do not have bionic hearing. This is a myth. There is no science that suggests people who have vision loss have better hearing than everyone else. This myth is repeated so often; everyone tends to believe that it must be true. It is not. Media portrayals of persons who are blind only seem to perpetuate this idea in our culture. Movies such as “Daredevil,” where the lead character becomes blind as the result of an accident and subsequently acquires superhuman attributes, has done little to shine the bright light of truth on these ridiculous misperceptions. Not only do movies like this do little to advance the cause of the disability community, they alter the way we are treated as a result.

Here is a specific example. Years ago, I was placed in the unfortunate position of having to complain to my apartment manager about my noisy neighbors in the building in which I lived. The apartment manager would do nothing, as he evidently believed the “heightened senses” myth. “Well, you have more sensitive hearing,” he explained, “so they just seem louder to you.”

When I meet someone with whom I’ve spoken in the recent past and inquire as to their latest health malady, they are astounded. “My goodness! How did you know I was sick? You are so sensitive and in tune with other people. It must be because you’re blind.” No, it’s because I was actually listening to you when you told me you weren’t feeling very well three weeks ago. I’m not distracted by your clothes, your car or your mannerisms; I’m paying attention to you instead. Unusual, yes. Extra sensory perception, no.

Another example of how I am forced to contend with the unenlightened attitudes of others is when their critical assessment of my appearance results in the proclamation, “Wow . . . you don’t look blind.” Inevitably, I will ask, “What does a blind person look like?” “I don’t know.” They’ll shrug. “I just expected that you would be wearing two different shoes, or shabby clothes, or that you would be old.”

This brings to mind what became a signature expression of our 43rd President when he ran for office in the year 2000. He often spoke of something he called, “the soft bigotry of low expectations.” At first I had no idea what that meant, then I thought about it and how it applied to me. I realized that there are many ways in which I am subjected to the soft bigotry of low expectations.

Often it seems that some people do not expect a person with a disability to be intelligent, articulate, educated or employed. Many express surprise when they discover that I am well educated, well traveled, well read and well dressed. I am expected to belong to a specific economic class, have a particular political affiliation or even possess a reduced intellectual capacity.

Making an assumption about any person and treating them according to that prejudgment is indeed a form of bigotry. A person with a disability is as individual as anyone. We have dreams, goals, ideas and opinions all our own. We are ambitious, motivated, productive and educated. We are wealthy, we are poor, we are jerks, and we are wonderful. We have all the same failings as the rest of the human race. A disability is one aspect of our lives with which we each cope in our own way, just as you cope with the death of a loved one, a bitter divorce, health crisis, natural disaster or other calamity. Believe it or not, it can also be a blessing in its own way. In some cultures, a disability is not considered to be a horrible misfortune. Rather, it is said that having a disability is God’s way of getting closer to you. What a lovely thought.

It’s true that in America we have made great progress in improving access for people with disabilities. However, removing physical barriers is only one part of a barrier-free environment. Awareness is a mind-set, not a mandate. Attitude is a significant facet of accessibility. All of the Braille dots and wheelchair ramps in the world cannot provide a disabled person with a job if a potential employer will not consider a candidate with a disability because of preconceived ideas as to the applicant’s capabilities. You can enhance your awareness by learning for yourself some of the more practical aspects of the lives of individuals with disabilities and how we really function. Granted, it is less fantastic than possessing a sixth sense, but knowing the truth will enable you to see me in a new way. Then, I’ll look just like everyone else.

Copyright 2010 by Laura Legendary. All rights reserved.

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