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DAIS Newsletter - May/June, 2003 (REDUX)
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DAMNED IF YOU DO, DAMNED IF YOU DON'T!

I have been fussing over this article for so long that the discussion that began it (on the DSSHE-L) has probably been forgotten by most. But I had a very difficult time trying to get a handle on what I wanted to say. I had all sorts of thoughts about the subject, from a number of different angles, and none of them seem to coalesce into a single themed article. There was no way I could BLANKET the topic in a cohesive way, and some of my thinking on this whole thing was not very COMFORT(er)ing. I worried that I was SPREADing it out too thin. In the end, a colleague convinced me that it didn't have to tie to together. What I present to you, then, is a PATCHWORK QUILT of thoughts on the subject…

Toward the end of May, this post appeared on the DSSHE-L under the subject line of "Alabama Commemorative Quarter."

<< Congratulations, Alabama, on your new quarter. Who would have expected to see Helen Keller being imprinted for all time on a coin, complete with the politically incorrect, "Spirit of Courage" banner beneath her? While I am pleased to see someone with a disability recognized as part of this great project, I am frankly amazed that the presence of deaf-blindness evokes a label of "courageous." I thought we had moved beyond that one. Sigh. >>

This touched off a HUGE debate about the appropriateness of honoring Helen Keller in such a way -- indeed, some questioned "honoring" her at all. The debate ranged back and forth on BOTH sides of the coin (pun intended!). Comments included:

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<< I'm delighted that Alabama chose such an overcomer for their symbolic contribution. Everything I read from the disability community, however, speaks against using terms like "courageous" when describing someone learning to live with a disability… >>

<< According to the article from Birmingham, the "politically incorrect" (as defined by ____) phrase "spirit of courage" was meant to refer to education. Merriam Webster defines "courage" as "mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty". Miss Keller was a champion of the value of education and sought and obtained one at a time when women were not encouraged to do so. She happened also to be deaf and blind, obstacles to education still today in our diversity conscious, politically correct 21st century world; they were formidable barriers during Helen Keller's life. I think it would be accurate to say that she does indeed represent a spirit of courage in the manner intended by the State of Alabama. >>

<< While I don't appreciate being assumed to be courageous because I have a disability, I don't mind being recognized when I do something courageous. I think Helen Keller was a courageous woman. She did some courageous things which have nothing to do with her disability at all. She spoke out on a number of important issues. She was a pioneer in achievements for people with disabilities, particularly people who are deaf blind. That said, I'm guessing the majority of people won't understand the subtlety of this stuff and will assume everybody who is blind is courageous. … Of course, attitudes do play an important role in that process and people do get attitudes from what they see. To summarize, I think people will misunderstand the message, but I also happen to think Helen Keller was very courageous. >>

<< Could it not be that the State of Alabama simply meant only to recognize a remarkable citizen who happens to be one that achieved great things and overcame the barriers of serious disabilities? Should she NOT have been chosen because she was disabled? >>

<< As a person, I have a great admiration for Helen Keller and her work. She really is a model to us all. But in my work, I'm not trying to raise Helen Keller's, and I remain concerned that the project amounts to poster-childing. … But from a state government that opposed the ADA-given rights of its employees so aggressively? I think this makes our work harder. Let us not expect our students to be little Helen Keller's, whether they have disabilities or not. Finally, I do believe that if Helen Keller had grown up in our time, she would be an outspoken advocate for the rights of people with disabilities and that this would never have gotten her image on the face of a state quarter. >>

<< The fact is that in some cases, learning to live with a disability calls for an exceptional amount of courage, or guts, if you will. It may also call for ingenuity, brains, patience, and stamina. But disability per se is not the only thing in this world that demands courage, ingenuity, brains, patience, and stamina. Being a parent comes to mind. So does being a DSS coordinator. I fail to understand why the word courage when applied to a genuine representation of that word's meaning would be considered patronizing, demeaning, and politically incorrect. >>

<< The problem only comes when "overcoming" is the only matter of public interest in disability and thinking that life with disability is characterized only by overcoming tremendous obstacles imposed by disability that becomes dangerous. >>

<< And for the media-- pity, triumph, and the absurdity that these failed normals would expect to be treated as citizens is the standard context. Go to Google News. They have a running database of 5,000-some-odd news sources you can mine. Look for the string "disability OR disabled" and see what you find there. Some news, but mostly the pieces that conform to the standard context. >>

<< There was a great controversy over what to put on our state quarter and I'm proud that Helen Keller was chosen. Her accomplishments, particularly in light of the status of both women and the disabled at that time, are amazing. >>

<< What does this mean to our field? That we practice in our work the acknowledgement of people with disabilities as whole people who are different and have a right to attitudinal and physical barrier removal. And that they do not have the responsibility of serving as icons of overcoming adversity so that pretty people who never had legitimate problem in their lives would have a lesson learned without the effort and feel good about It. >>

<< We had a history professor who stirred up quite a bit of controversy after a lecture he gave on Martin Luther King, Jr. at an MLK celebration several years ago. The prof said that we should take care not to go overboard in our hero worship so that the average person feels inadequate and not up to the challenges of civil rights work. Some felt the prof disrespected MLK. Others endorsed the idea that we can honor the achievements of great people without erasing their humanity at the same time. This Helen Keller thread is like this. We do need heroes, and Helen Keller fits the bill. But it's also a good idea to keep Helen in context. And it's especially important to understand that civil rights movements are carried out by average people behaving in ordinary sorts of ways. If we have to spin myths to replace tired paradigms, then let the myths lubricate the change, not stall it. My hat is off to the great State of Alabama, for at the very least, the decision to put Helen Keller on the state's quarter. Let's us enjoy the opportunity to debate things like courage in forums like DSSHE-L. >>

<< It seems to me that Keller's impressive accomplishments followed a pioneering Laura Bridgman, of Samuel Gridley Howe, the most notable teacher of the blind. I highly recommend this book:
The Imprisoned Guest: Samuel Howe and Laura Bridgman, the Original Deaf-Blind Girl by Elisabeth Gitter.
Laura is the pioneer here. Keller just got more press, not to diminish the wonderful work that she accomplished in her lifetime. >>
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Are you as confused and confounded as I was, after reading all this? Let me see if I can pull out some of the recurring themes:

1) NOBODY had anything bad to say about Helen Keller. Well, duh! Who wants to be accused of kicking a guy in a wheelchair?!? Of course, there were several suggestions (some subtle, some not) that what the public believes to be special about Helen Keller was overstated, or amounted to undue recognition, or even that she wasn't all that special, she just had an exceptional teacher in Annie Sullivan.

2) It isn't Helen Keller's fault if the public treats her as an icon and idealizes her life. That's simply a result of the misperceptions of those foolish AB's who have no understanding of the disability experience and never will. It's OK for US to respect her because of all that she accomplished, but we resent the fact that the nondisability community will never understand it the right way.

3) The real problem is that the general public thinks she is courageous "despite her disability." They respect her for the wrong reason, and thus they think any person with a disability who isn't outstanding is somehow lacking. Meantime, when we recognize Helen Keller for the *right* reasons within the disability community, we set unrealistic expectations for people with disabilities, not all of whom will be outstanding or famous. (Of course, the unspoken conclusion of this thinking is that it would be better if the Helen Keller's of this world weren't recognized at all, but everyone was too PC to say that!)

Why can't the disability community simply be satisfied with the good press -- we certainly are quick enough to jump on the BAD press! We bemoan every court decision that seems to curtail the disability-rights movement in some way, and are livid at perceived slights in public contexts (remember the flap about the Nike ad some time ago, or the talk about boycotting ABC because of a biased program by John Stoessel?). But finding something -- or someone -- that the disability community agrees is a good representation of who/what we are all about is more difficult.
We don't want the media to focus on people who have achieved "DESPITE THEIR DISABILITY" but we are annoyed with folks with disabilities who are in the public spotlight and don't mention their disability, or -- worse yet -- who refuse to stay disabled enough to be a good representative of the community. There were many in the Deaf community who were angry with Heather Whitestone, the deaf woman crowned Miss American in the mid-90's, because she chose to speak for herself in public, rather than having an interpreter reverse interpret for her (Academy Award winner Marlee Maitlin got the same grief from many of her detractors a decade earlier). Disability rights advocates decry the fact that FDR hid his disability from the world instead of making it known to everyone, while they simultaneously decry the fact that Helen Keller was very PUBLICLY disabled and neither ashamed of it nor held back because of it.

"The Magnificient Deception" -- of Whom???
Remember all the consternation, a couple of years back, about the quote chosen to grace the statue of FDR in his wheelchair in the FDR memorial? I did some rooting around online, and found the quote below from one of the folks who served on the committee of people from the disability community asked to suggest an appropriate quotation. It struck me that it largely mirrors the themes of our DSSHE-L discussion re: the Alabama quarter:

<< To provide criteria for selecting the inscription in the new room, we suggested three themes that should be emphasized, and three that should be avoided. We sought a quotation, first of all, that would advance the idea that disability is integral to a person's character and life experience, rather than a defect to be eliminated. Second, we wanted a quotation suggesting that the experience of disability can enrich a life, foster leadership, and create a sense of community. Third, in keeping with the human scale of the statue, we searched for words hinting that F.D.R.'s disability made him an accessible -- rather than a lofty -- hero. In other words, we recommended that any new inscription present disability as a common, yet influential, human experience, one that can be integrated into a meaningful and full life.
Conversely, we argued that the quotation should avoid the stereotypical narrative that disability is a tragic experience to be overcome. Discrimination, more than impairment, is what people with disabilities have to surmount. Our second caveat was more complex: In keeping with our conviction that disability should be viewed as a political issue of rights and access, we intended to circumvent the idea that disability is simply a matter of having an individual impairment to contend with. Recasting social attitudes and removing environmental barriers are more important for improving the lives of people with disabilities than are their own spunk, saintliness, iron will, or the generosity of others. Third -- the most subtle point to convey -- we strove to dispel the pervasive attitude that disabled people warrant attention only to provide lessons or inspirations to others. We wanted to focus on how F.D.R. himself experienced disability, rather than turn him into a homily for the nondisabled that inspires pity and admiration -- or gratitude that they are not themselves disabled. >>

The quotation that advocates had wanted was from FDR:
"We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought."

The quotation they got was from Eleanor Roosevelt:
"Franklin's illness gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons -- infinite patience and never-ending persistence."

Now, don't get me wrong… I think the quote from FDR himself would have been a better selection, too. But as I went back and read the criteria set up by the committee, it seemed to me that the only two aspects of the their criteria that were NOT met by the quotation that was chosen were the two that suggested that disability is linked to discrimination and a political issue of rights and access. But it seems unlikely that FDR ever experienced his disability as an issue of discrimination. The whole point is that he was disabled and it DIDN'T matter (at least, not in a negative sense) to what he accomplished. This was meant to be a memorial to FDR, not to the disability rights movement. Would FDR have supported disability rights? Absolutely. Is it what he was all about? No… it wasn't… not even if we wanted it to be.
Why are we never satisfied with the portrayal of our (disability) heroes? The Disability Studies folks complain bitterly of the portrayal of people with disabilities in literature and entertainment, from the wicked Captain Hook and the evil Long John Silver, to the victimized Blanche of "The Glass Menagerie," to the convenient disability-of-the-week trotted out for made-for-TV flicks. But Helen Keller, others say, provides an unrealistic goal for which to strive; most deaf-blind folks could never receive a Ph.D. from Radcliffe and shouldn't be expected to try. Not every child can or should want to sing like Ray Charles or Stevie Wonder. To which I say, "that's true…so what?!?"
Every other subgroup of society (whether divided by age, ethnicity, gender, or…) seems to choose its heroes from among its most outstanding, unusual, unique members. Do you think Colin Powell will go down in history as having been the single greatest General of his time -- or as being the first African American to hold such a very visible position of power and authority, and of being damn good at his job? Will the name Sandra Day O'Connor be remembered above those of other Supreme Court Justices who served before and after because she is such an outstanding jurist -- or because she was the first woman appointed to the Supreme Court? Do you really think every little kid who straps on a pair of Nikes and picks up a basketball thinks he is going to BE the next Michael Jordan -- or is it just something to wish for, hope for, emulate? Everybody else seems to think it is just fine to keep reaching for the stars, and looking up to people whose accomplishments we know we will never match, but the disability community is uncomfortable with too much achievement. Stray thought -- perhaps the only "disability hero" we've seen in recent times who would suit everyone is Casey Martin. He is clearly disabled, he fought hard to make a difference, but he never played tournament golf again after he received a judgment in his favor. What he did was important, but he didn't have the audacity of being too ostentatious in his success.

Approach-Avoidance Conflict
I was first introduced to the term "approach-avoidance conflict" as a possible explanation for some forms of stuttering. Here is a quote from someone who has been there:

<< (Famous Speech Pathologist Joseph Sheehan said) "…stuttering is a resultant of approach-avoidance conflict -- of opposed urges to speak and to hold back from speaking…"
Joseph Sheehan's statement strikes me as a brilliant insight; a revelation which is so obvious that it is deeply profound. Yes, I know that pull-push conflict so well, occurring physically in my speech, and also internally. It is as if I am impelled simultaneously to move forwards and stay where I am; to share myself with others and hold back from sharing; to struggle very hard against a problem and to surrender to it; to try to make people understand me and to give up trying. Just as my speech gets "stuck", so I end up "stuck" psychologically…. >>

Perhaps even more to the point, I found this definition of approach-avoidance conflict in a psychological context:
<< …conflict resulting from a single goal having both desirable and undesirable consequences or qualities. >>

You tell me -- is the disability community conflicted over this stuff or what? We desperately want the nondisability community to know and understand people with disabilities as people, first and foremost, but in our heart-of-hearts, we don't seem to believe them capable of doing that. We WANT them to hear our story, but ASSUME they will not understand it when they hear it. We yearn for recognition… and scowl when it comes. Then, when we are dissatisfied with the message conveyed (or at least the perceived response to that message), we either downplay the message -- or try to shoot the messenger!!! But WHY are the attitudes of others so important to us?

ATTITUDINAL BARRIERS
Perhaps the most fascinating part of my research in preparing this article came at the point that I got online and did a search for "attitudinal barriers." Guess what? Fifty-six of the 57 references that came up first were in reference to disability. It appears that WE are the ones who are hung up on attitudinal issues, much more so than any other traditionally underrepresented group. That surprised me. I am so used to talking about attitudinal barriers (and hearing them discussed) in disability circles, that I simply assumed that all groups felt, as we do, that one of the biggest hurdles to be faced in achieving equity is getting past the attitudes of others. But none of the others seem to care all that much what the mainstream thinks -- they are focused on actions more than attitudes. I wonder why…
Could it be that the disability community is hung up on attitudinal barriers because we are still desperately searching from validation, from others, that we ARE as capable of competing on that level playing field? We want the nondisability community to acknowledge us as equals and give us credit for our accomplishments so that we can feel good about ourselves.
Or… maybe we keep reminding ourselves and others of all those attitudinal barriers out there because it gives us an excuse when we DON'T succeed. There is something very "safe" about knowing that no matter how good we are or how well we do, the attitudes of others may prevent us from being successful. It gets us off the hook when trying to explain away our failures. (Don't make faces… no one is ALWAYS successful, and we all have failures sometimes. But isn't it nice to know it isn't your fault?)
Fortunately, there is another (less negative) reason for being legitimately concerned about attitudinal barriers. I think most folks would agree that changing behavior is more important than changing attitudes. However, in order to enact a change in behavior, you have to have one of two things… EITHER a change in attitude, or enough threat of sanctions for NOT changing to encourage folks to do things differently. The fight for racial equality or gender equity in this country has traditionally been fueled by the threat of sanctions so significant (legally and economically) that it made people sit up and take notice. But until the coming of 504/ADA, there were no SANCTIONS to be feared in regards to disability… and with the way the courts are these days, we aren't quite sure where we stand even now! So… we worry about the attitudes of others and how to make them understand our issues because we see such understanding as a significant force in changing behavior. That makes sense. I'm not sure I buy it, but I can live with it!

NOW WE KNOW WHY… BUT NOT HOW!!!
It appears that there is nothing that can be done to satisfy the disability community. If the media publishes the story of an ordinary person with a disability, doing everyday things to contribute, and mentions that the person has a disability, the writer is vilified by the disability community because there was no NEED to mention the disability. If they write about some ordinary person with a disability doing everyday things well, and don't mention the disability, we vilify the writer in saying that the AB's once again failed to acknowledge our contributions. On the other hand, if the media makes much of a famous person with a disability, we ASSUME they are only impressed because he/she has a disability. If they DON'T publicize the accomplishments of famous people with disabilities, we criticize their lack of inclusiveness and their insensitivity to the many contributions of people with disabilities to our society. They're DAMNED IF THEY DO, AND DAMNED IF THEY DON'T… and it is *OUR* fault, not theirs!
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