Category: Activism and advocacy

One lesson I have learned as a professional speaker is that a certain percentage of people are going to love you no matter what you do.  They will admire you simply because you have the guts to stand up in front of a roomful of people, and they do not.  On the other hand, there are an equal percentage of those who will find fault with everything you do.  There is no pleasing them.  They may dislike your appearance, your clothes, your mannerisms, or the fact that you are a dead ringer for their ex-girlfriend.  You really may not be able to elicit realistic feedback from either group.  All you can do is reach out to the percentage in the middle.

It never ceases to amaze me the depths to which some will sink in an effort to reduce others.  If you are the least bit sensitive, then you know the acute burn of a cruel remark or scathing review of your efforts.  It can be so painful, especially if you’ve worked hard to craft an image, a message or a legacy of positive contribution.  It can really sting, and it can leave you feeling defensive, as if you must strike back to justify the choices you made.  Sometimes, criticism can really cause you to second-guess yourself, and that can be so disheartening.

It can be hard not to become embittered by criticism, especially if the negative note seems unnecessary.  If I’ve made an honest error, for example, why must it be made public?  Why not just give me an opportunity to correct the oversight?  After all, is misspelling something really such a crime?  Perhaps it wasn’t even a misspelling per se, perhaps I really do know how to spell the word "and," but the typo might suggest sloppiness due to haste, rather than stupidity.  Does that warrant public humiliation?

You may not even be seeking to be controversial.  Maybe you’re just clicking along, doing your thing, trying to generate some good karma.  Then, out of the blue comes a not-so-thinly veiled insult for something about which you cared a great deal getting just right.

What can be particularly onerous about criticism sometimes is when we learn where it has come from.  It might be from someone who you think ought to be in your camp, a fellow warrior for good, someone you thought had your back, or an entity or organization who shares your goals, fights the same fight.

If you are one of those people who have a tough time accepting criticism, you are by no means alone.  Here are a few suggestions that may help.  In order for any of these ideas to work, though, you have to really internalize them, and make the decision to change your thinking.  It’s very hard to do this, but it is a fact that if you can change the way you think about something, you can change the way you feel about it. This is a principle taught in a discipline called CBT, or cognitive behavioral therapy.

First, consider this:  You have arrived.  if your work has caught the attention of a major competitor or even an entity you considered to be so much larger as to be no competition to you at all, then be flattered.  I recently found my work mentioned in a somewhat unflattering way in a post by a national organization.  I certainly never thought I’d ever appear on their radar screen.  I had been wondering where the huge spike of interest and massive numbers of page views had been coming from.  Thanks, organization X.  Blast away.

Realize that in this day of potential over exposure due to sharing, retweeting, updating, linking, liking and all manner of promotional opportunities, it’s just that much easier for someone to take a shot at you, and bolster their own popularity by it.  Look, if someone else is that small that they have to take cheap shots at you so as to raise their own acceptability quotient, doesn’t that sort of speak for itself?

On the other hand, everyone is entitled to his or her opinion, and if someone genuinely takes issue with something you are doing, there’s just not much you can do about that.  What makes criticism hard to swallow in this case, though, is that perhaps what you did was well thought through, you did what you did deliberately, you had good reason for it, it was not an error.  Yet, someone else feels a need to ridicule what you did as incompetent.

You may find that the source of the criticism offers no means by which to respond.  They can dish it out, as the saying goes, but they can’t take it.  I discovered that myself a while ago when I tried to respond to something written about me that was just flat wrong, wrapped in a nasty tone.  Anyone who makes dialogue impossible really isn’t interested in anything other than their own views, and there is nothing you could do about that, even if you did have some recourse. For them, even accuracy is irrelevant. Besides, not everyone who hears or reads the criticism is going to agree with it.  No one is wholly enrolled in the opinions of others.

So, what is the point of this little manifesto, and why am I including it in a blog about accessibility?  Because for those of you who are struggling to bring enlightenment, education and awareness into the world, you deserve to be commended.  Don’t ever give up.  Even if a competitor or organization to which you aspire or with which you want to be associated finds fault with what you are doing, recognize that perhaps they feel threatened by your great work.  there is a famous radio talk host who boasts that when his commentary invokes the wrath of all concerned on every side of an issue, he knows he has hit a nerve and is doing something right.  Well, so are you.  Who else but my entrepreneurs with disabilities, fellow advocates and activists, accessibility experts and educators work so hard for so little?  The world only listens to you when they need to hear, but until then, it seems they could care less.  Until they are directly affected, the world may marginalize you, ignore you or find a reason to trivialize your work by not paying you what you are worth.  The fact that you volunteer to do what you do is evidence of that.  Sure, maybe you choose to volunteer, and that’s great.  If you can afford it, all the better.  Think about this, though:  How many people do you know who are willing to do for free what they do for a living?  Do you know anyone who has said to his or her boss, “You know, I’m tired of getting paid.  From now on, what I do here is gratis.” 

Why do I have so much respect and admiration for individuals who have disabilities?  Well, it isn’t because you are disabled.  It isn’t even because you work passionately and tirelessly to make the world a better place by advocating for others or raising awareness.  Many years ago, I was privileged to attend a conference that featured a well-known disability rights advocate, and he put it this way:  "People who have disabilities are my heroes because they fly in the face of a society which holds them in contempt, simply by living their lives."

Fight on!  I’ve got your back. 

LL

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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.

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.