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How close is disability?

More often than not, we seem to ignore the frightening reality that like it or not, disability is only a fraction of a blink away.  Many of the mainstream world may choose to believe that they can avoid disability.  That if they ignore it, it will just simply go away and that if they don’t think about it, it will probably never affect them.  Right?  Wrong!

Believe it or not, disability can affect anyone.  Disability does not discriminate and it can make anyone its victim whenever it wants and wherever it chooses.  From the youngest to the oldest.  From the tiniest of babies to the oldest of persons. 

An innocent child could be born with a disability; a crippling disease, a mental disability, or with loss of vision.  A healthy child or teen could unexpectedly develop a disability, lose their vision, or be crippled in an accident and the same could be said for any older person.  It lurks around the next corner. 

So what is my message for today?  It is always wise to remember how close disability is.  It lurks in the shadows.  It often turns up unexpectedly.  It often comes into our lives uninvited.  It comes in several forms; blindness, mental illness, loss of hearing, physical disability, and more. 

Disclaimer:

This blog is curated by the AEBC, but welcomes contributions from members and non-members alike. The thoughts, views, and opinions expressed in the Blind Canadians Blog are those of the contributing authors and do not necessarily reflect those of the AEBC, its members, or any of its donors and partners.

Comments

Dear readers:
Last week, I posted this blog with the
intent that it would spark some healthy debate and I also wanted to highlight my belief that much of society holds these perspectives.
What I failed to do was to state that these were not my personal opinions but rather my perspectives that this is what society believes.
My blog was never intended to offend anyone.
I apologize for any miscommunication.

I have read the comments and I feel this blog was well written and appropriate.

A family member worked at a hospital on a stroke rehab and there are patients who have a sense of entitlement and victimization with a "why me attitude". Many people feel that this should not be happening to them. There seems to be a societal belief that "others" are disabled and it is "not my problem".

The general public does ignore problems such as disability, homelessness, and addiction. If this was not the case there would not be a need for interest groups or charities. The average individual is concerned with the norms of society, and many taboos are not discussed such as dealing with a disability, mental illness or addition problem.

Those who are disabled are the strongest advocates who recognize problems and have concerns about the system. If this was not the case, advocates would not have to fight for the things that many in society take for granted. In my opinion, if society truly cared about others than many charities would not have to exist. If the public recognized that everyone could be disabled it would not be difficult for the public to support charities that support those with disabilities instead of considering it a fringe issue.

Hmmmm, I do not dare comment further as i seem to be missing the point all together and apparently do not get it. I do feel bullied but oh well!! It is not worth challenging. I shall become one of the silent ones. I am certain even these few lines will get me into trouble. Oh well!!

robin East

Bullying was certainly not my intention. I disagreed with some of what you said, and I explained why I thought your position was wrong. I made no personal attacks, I responded only to things you actually wrote, I did not use sarcasm or subtle insults, and I did not disparage you as a person. It would be unfortunate if you decided not to explain in what ways you disagree with what I or others have said. I know I'm always interested in understanding when people disagree with me, so if you disagree with something I've said, I would be very interested in knowing with what you disagree and why.

Again, I want to thank Donna for her personal view of how what I believe folks in our community perceive those of us wit disabilities and the aspect of becoming disabled. Those that think about it and talk about becoming disabled are frightened. They are frightened because they will suddenly have to change their lives, dramatically, in their opinion. They do not see how well one can live and function in society wit a disability. They see the advocate doing a great job protecting their rights but see that person most likely as being rude and obnoxious. They see a person tip tapping with their white cane and they have horrible thoughts of what they would do if they lost their sight. The pity thing. To folks without disabilities, indeed, there is fear that this thing called a disability lurks, that is right, lurks around the corner and may get them. This scares them. Rightly or wrongly!! They would feel like a victim and victimized as they think in horror of the differing disabilities that may befall them.

Yes, the picture in our world of what it means to be disabled or have a disabling factor is horrifying. This is the public perception.

I am certain each and everyone of you has experienced the questions of folks that are posed in such a way as to elicit a response to make the person asking it feel better. You have likely also experienced those uncomfortable questions or the questions that get back to you from friends like how does he cook his food or I wonder who helps her get dressed in the morning or how do you go to the bathroom? And, not asking where you work because as we know persons with disabilities can't work, right!! All perception. All perception and it is out there and I am certain each of you experience this each day.

What Donna started is an important discussion. Not on the words of lurking or victim, etc.. rather on how do we as individuals that happen to have a unique characteristic and that characteristic is loss of sight or loss of hearing or loss of some type of mobility -- how do we perceive ourselves?
We need to look inward and be comfortable with whom we are. Part of the problem our community has in regards this is that we always have folks joining our club. Those folks that suddenly find themselves with a characteristic not unlike ours. Suddenly, a person that sees cannot; a person that hears cannot; a person that had full mobility no longer has all their mobility.

These folks with their newly discovered characteristic grieve for what they lost. It takes weeks, months, years, and sometimes never before they realize that it is a characteristic they is part of who they are and for them to be comfortable with it and get along with life.

The perception of folks without our characteristic and the perception of folks still in that grieving process affect the perception of all of us. It is like putting a drop of ink in a glass of water. The clear water takes on the tinge of that colored drop and the entire body of water in that cup is affected.

So, how close is disability...well, donna, as I stated before it is indeed close and I thank you again for such a thought provoking personal blog. I also want to thank each person that has contributed to the blog in regards to comments.

The beauty is that no one is right and no one is wrong. These are all opinions and of course the purpose of a blog is to affect change in some way. Or, at least that is what I personally believe.

There is no need to defend or get up into arms the language used here as it is not the important thing. The important thing is to give some thought to what is being said. Give it some consideration. However, know this the folks that do not have characteristics like ours do not think about any disabling factors. They only think of what it may be like to have a disability or a characteristic like ours only when they see one of us, experience one of us, read about one of us, or, if you will, have a discussion. I would suspect in the vast majority of these thoughts the perception is not good. It is indeed thoughts as perceived like lurking, victim, cripple, end of life as one knows it, home bound, poor, dependant, and the list goes on and on.

The next step is how do we get a balance? How can advocacy organizations and service organizations over power the "fear" syndrome? How do we make the perception of advocacy become positive instead of the bullying image it has? How do we show that having a disability is like a characteristic of ourselves it is part of us. How do we show the public that we own it, live with it, and get on with life.
How, How, how...

One of the ways to affect change is to read the "success Story" booklet on the AEBC site. It is filled wit positive upbeat individuals and how they are moving forward. Check it out. Add to it by sending in your story. It is a small contribution but it has a huge affect.

Robin east

Again, I want to thank Donna for her personal view of how what I believe folks in our community perceive those of us wit disabilities and the aspect of becoming disabled. Those that think about it and talk about becoming disabled are frightened. They are frightened because they will suddenly have to change their lives, dramatically, in their opinion. They do not see how well one can live and function in society wit a disability. They see the advocate doing a great job protecting their rights but see that person most likely as being rude and obnoxious. They see a person tip tapping with their white cane and they have horrible thoughts of what they would do if they lost their sight. The pity thing. To folks without disabilities, indeed, there is fear that this thing called a disability lurks, that is right, lurks around the corner and may get them. This scares them. Rightly or wrongly!! They would feel like a victim and victimized as they think in horror of the differing disabilities that may befall them.

Yes, the picture in our world of what it means to be disabled or have a disabling factor is horrifying. This is the public perception.

I am certain each and everyone of you has experienced the questions of folks that are posed in such a way as to elicit a response to make the person asking it feel better. You have likely also experienced those uncomfortable questions or the questions that get back to you from friends like how does he cook his food or I wonder who helps her get dressed in the morning or how do you go to the bathroom? And, not asking where you work because as we know persons with disabilities can't work, right!! All perception. All perception and it is out there and I am certain each of you experience this each day.

What Donna started is an important discussion. Not on the words of lurking or victim, etc.. rather on how do we as individuals that happen to have a unique characteristic and that characteristic is loss of sight or loss of hearing or loss of some type of mobility -- how do we perceive ourselves?
We need to look inward and be comfortable with whom we are. Part of the problem our community has in regards this is that we always have folks joining our club. Those folks that suddenly find themselves with a characteristic not unlike ours. Suddenly, a person that sees cannot; a person that hears cannot; a person that had full mobility no longer has all their mobility.

These folks with their newly discovered characteristic grieve for what they lost. It takes weeks, months, years, and sometimes never before they realize that it is a characteristic they is part of who they are and for them to be comfortable with it and get along with life.

The perception of folks without our characteristic and the perception of folks still in that grieving process affect the perception of all of us. It is like putting a drop of ink in a glass of water. The clear water takes on the tinge of that colored drop and the entire body of water in that cup is affected.

So, how close is disability...well, donna, as I stated before it is indeed close and I thank you again for such a thought provoking personal blog. I also want to thank each person that has contributed to the blog in regards to comments.

The beauty is that no one is right and no one is wrong. These are all opinions and of course the purpose of a blog is to affect change in some way. Or, at least that is what I personally believe.

There is no need to defend or get up into arms the language used here as it is not the important thing. The important thing is to give some thought to what is being said. Give it some consideration. However, know this the folks that do not have characteristics like ours do not think about any disabling factors. They only think of what it may be like to have a disability or a characteristic like ours only when they see one of us, experience one of us, read about one of us, or, if you will, have a discussion. I would suspect in the vast majority of these thoughts the perception is not good. It is indeed thoughts as perceived like lurking, victim, cripple, end of life as one knows it, home bound, poor, dependant, and the list goes on and on.

The next step is how do we get a balance? How can advocacy organizations and service organizations over power the "fear" syndrome? How do we make the perception of advocacy become positive instead of the bullying image it has? How do we show that having a disability is like a characteristic of ourselves it is part of us. How do we show the public that we own it, live with it, and get on with life.
How, How, how...

One of the ways to affect change is to read the "success Story" booklet on the AEBC site. It is filled wit positive upbeat individuals and how they are moving forward. Check it out. Add to it by sending in your story. It is a small contribution but it has a huge affect.

Robin east

Robin asked,

"The next step is how do we get a balance? How can advocacy organizations and service organizations over power the "fear" syndrome? How do we make the perception of advocacy become positive instead of the bullying image it has? How do we show that having a disability is like a characteristic of ourselves it is part of us. How do we show the public that we own it, live with it, and get on with life. How, How, how…"

We change perceptions by educating, by challenging negative attitudes, by putting forward positive portrayals, by arguing against misperceptions and prejudice, and by using whatever publications available to us, including this blog, to do all of these things.

We do not change attitudes by perpetuating them, by reinforcing them, by defending them, by writing articles in our publications in ways that suggest that we ourselves believe them.

Robin wrote,

"The beauty is that no one is right and no one is wrong. These are all opinions and of course the purpose of a blog is to affect change in some way. Or, at least that is what I personally believe."

No one is right and no one is wrong? So if someone gets on here and says that women are not as intelligent as men, or that aboriginals are inherently more likely to commit crimes, would you say that's just an opinion, neither right nor wrong? I would say that's wrong, and I would argue against it. It's true that many people have negative attitudes about disability, and just as we have been able, at least to some extent, to correct misconceptions and ignorance about women and aboriginals, we should be trying to do the same about disability. Thinking of people with bodies that don't function in typical ways as victims of the disability monster lurking in the shadows is absolutely wrong. It may be true that many people feel this way, but it's also true that many people, including some women, felt that women were not capable of holding many types of jobs. Women and some men had to work incredibly hard to change these perceptions, and we have to do the same when it comes to disability. I don't think that saying it's just your opinion is good enough. We need to try to correct mistaken attitudes.

If there were anything in the blog post that indicated that these were not the opinions of the author, we would be having a very different conversation. The post in no way challenges the negative attitudes put forward; it simply reinforces them. The only challenge to these attitudes has come in some of the comments.

What sort of debate is supposed to come out of this post? Are we supposed to be debating about whether disability is or is not a terrible tragedy? I guess I thought we were past that debate. Perhaps we are supposed to debate as to how exactly to educate the public, but I fail to understand in what ways the post encourages such a debate. All the post appears to do is to encourage people to think more about disability by presenting disability as a terrible tragedy that might befall them. I've read it quite a few times now, and if I'm misunderstanding something in the post, I would certainly welcome some clarification.

Tyler,

You may want to read the comments again more carefully. No one said that the problem was with the idea that the general public needs to think more about the possibility that they could experience disability. In fact, several comments said that that is a perfectly appropriate message.

The criticisms have been with the method used to try to get the public to think more about the possibility that they could experience disability. The way this is achieved is by presenting disability very negatively. Disabled people are characterized as victims of disability. The possibility of experiencing disability is characterized as a "frightening reality". Disability itself is characterized as a scary monster that some times lurks around the corner and sometimes lurks in the shadows. Disability is also contrasted with health, even though it is perfectly possible to be healthy and disabled. In general, disability is presented very negatively, and I would argue, disability is mistakenly portrayed as something inherent to the individual. Read my first comment to find out why this is a mistaken view. This sort of negative portrayal of disability is not the sort that is promoted by the AEBC. Typically, we're fighting these attitudes, not perpetuating them.

So while there is some truth in your comments, I think you've entirely missed the point of the criticisms of the post.

I echo what has already been said. This does not accurately reflect the views of the membership, which is very apparent by the replies to this blog post.

While I fully agree with freedom of speech I am very concerned that this is a public forum and this is not only sending out the wrong message to members of the public but acts as a deterrent for future potential members and alliances. There certainly needs to be a disclaimer or some form of censorship.

This opinion made me cringe. I found it disconnected with what we are about and even contradictory to the core of our existence as members carrying the mission of our organization. Such a damaging message should not be coming from a position with accountability.

Much of what I think of the post has already been said by others who have responded already. Even though it is the writer’s opinion, it is unfortunate she chose to use such archaic language in this post. AEBC and other organizations have tried so hard over the years to change the perception of having a disability by working to encourage positive portrayals of people with disabilities in public education materials, fundraising materials & in all forms of the media. Even though this blog is a forum for open and free discussion, without a disclaimer at the beginning saying something like “the opinions expressed in this blog may not necessarily be the opinion of AEBC....” then we do pose the risk of readers thinking it is the actual opinion of the organization.

How close is disability?

More often than not, we seem to ignore the frightening reality that like it or not, disability is only a fraction of a blink away. Many of the mainstream world may choose to believe that they can avoid a disability or persons with disabilities. That if they ignore the disabling factors or persons with disabilities , it will just simply go away and that if they don’t think about it, the disabling factors or persons with disabilities would probably never affect them. Right? Well... Wrong!

Believe it or not, disability can affect anyone. Disability does not discriminate and it can be you that becomes disabled. This disabling factor can occur whenever it wants and wherever it chooses. From the youngest to the oldest. From the tiniest of babies to the oldest of persons.

An innocent child could be born with a disability; a crippling disease, a mental disability, or with loss of vision. A healthy child or teen could unexpectedly develop a disability, lose their vision, or be crippled in an accident and the same could be said for any older person. the possibility of becoming disabled does lurk around the next corner.

So what is my message for today? It is always wise to remember how close disability is. Disabling factors lurks in the shadows. It often turns up unexpectedly. It often comes into our lives uninvited. It comes in several forms; blindness, mental illness, loss of hearing, physical disability, and more. The general population is not aware and do not care of the disabling factors until it is to late. In regards to persons with disabilities until we are front and center we are out of sight out of mind for the general public. However, it really does come down to How close Disability is!!!

donna, I have taken some liberties with your blog and changed some words. Maybe changing other words like "crippling" etc may be in order. however, the message you pose is thought provoking. folks with out disabilities hide their heads in the sand going out their daily routines without a thought of the possibilities of suddenly becoming disabled. further to this, it may be that who cares. A disability is, in my way of thinking, a characteristics of that person. we all have limitations in some way or other. However, the public without disabilities really does not give this an instant thought. Nor, do they really think of persons with disabilities unless they are face to face to one and then not sure what to do. On the other hand persons with disabilities, I find, to be extremely self absorbed about their disability and extremely rude. They think the world owes them a favour and thinks the world should be constantly looking after them. Should the world be doing this? Should we, as persons with disabilities, expect folks to cater to our every needs? I see two groups here. One that is going on their business not giving a rats ass as to what it may be like to be disabled or how to accommodate or how to make something "universal". Persons with disabilities on the other hand, the other group seem to be hell bent trying to be part of that other group. Hmmm, could it be we are all in the same group both the folks with disabilities and the folks without. we all seem to have some sort of functional limitation, do we not? So if I do not give a rats ass about someone with Chronic pain (invisible disability) should they give a rats ass about my blindness? disability is close to everyone and everyone is affected. Some are aware some are not.

Well, like a blog, I am rambling and likely not making much sense. However, Donna, your blog, however, maybe worded not quite the way I would like certainly gives food for thought. Because we are disabled does not make us "special" and does not make us "wonderful". In a number of cases the public sees persons with disabilities being rude at restaurants, stores, in hospitals. Likely due to our lack of being accomodated -- I suspect. Nevertheless that image is the one we have. It is likely this is the only thought someone that does not have a disability has on us persons with disabilities. Hmmm, I seem to have moved off topic from Donna's original post. Oh well, it got me thinking and that is what a good blog should do. so donna, thank you.
robin East

Robin wrote,

"On the other hand persons with disabilities, I find, to be extremely self absorbed about their disability and extremely rude. They think the world owes them a favour and thinks the world should be constantly looking after them."

Who needs enemies when the disability rights movement has friends like these? In the AEBC, we not only try to present disability, particularly blindness, in a more positive light, we also try to break down stereotypes and prejudice, exactly the kinds of sentiments expressed and perpetuated in the statement above.

I encourage you to substitute aboriginals, or women, or homosexuals in place of "persons with disabilities", and then make a sweeping and negative generalization that is meant to cover all of the members of that group. If you did, the statement would be overtly racist, sexist, or homophobic. The statement above is nothing short of ableist.

Robin, you're talking about me and every other person that has responded to this post. You're talking about every blind member of AEBC. You're talking about every blind member of every organization that is part of the coalition for which you are the chairperson.

So far as I can tell, the quoted statement has nothing to do with either the original post or any of the comments, and I have no idea why it was made, but we can't allow such ableist remarks to go unchallenged.

Approaching disability issues from the angle chosen by Donna will only lead to added marginalization of persons with disabilities. What I read is beyond shocking and will take us generations back. Progressive movements and policies promote accessibility and inclusion based on building environments and infrastructures that accommodate all people taking into account the wide spectrum of traits that exist. Honestly, using verbiage such as “victim” and “cripple” to talk about us, persons with disabilities, is scandalous. This part of the blog must be censored.

Censorship is a slippery slope. I do not think we want to get into a circumstance where only those views that are consistent with what a few people think is "right" are permitted. There are limits, of course, but my personal view is that this does not rise to the level of requiring censure. My hope is that the debate which it will surely arouse will remain respectful.

What is more important is that the perspective be responded to and alternative views expressed. The ensuing debate may be more educational to readers. If one just posts the positive side, it is not necessarily as credible as if there is a challenge to it and the challenge overcome.

I posted my views below and I agree with you. But rather than advocating for censorship, I think it would be more valuable to those who come after us to understand what about this viewpoint is so objectionable.

Anthony, I am all for the freedom of expression and open discussions; however, I felt that portraying disability in such a dark manner goes against what we wish to promote at AEBC. The reasoning I outlined in my comment is further justified by the fact that this blog is opened to the public and it does not send the best image about us.

I am not so sure about the post from anonymous above. I have read much of this string of entries and what I see is a good healthy debate where both sides have presented valid points of view. What I see in the disability movement is a tendency that people are supposed to behave in a certain way in order to be accepted. Failure to conform results in them being ostricized. Instead, we need to learn more about the circumstances of the person who is expressing a point of view before we attack or criticize them. A person with a disability born outside Canada may, for example, have a very different perception of disability and its effects than we do.

In short, this is a very healthy discussion where the points of Robin, Donna and Mark all have validity. The question for us as a movement is how we bring these different perspectives into alignment so that we can work together as a community to make things better. Who knows the answer to this one?

I'm glad you decided to comment, Bob.

Bob wrote,

"I am not so sure about the post from anonymous above. I have read much of this string of entries and what I see is a good healthy debate where both sides have presented valid points of view."

I cannot say I agree with that assessment. The criticisms of the post have been with the portrayal of disability as a fearful tragedy to be avoided, not with the attempt to encourage people to think more about the possibility that they too could experience disability. The only defence I've read is of the latter point, but since no one was objecting to that point in the first place, such a defence did not engage with the actual criticisms. So I don't think there has really been a debate. If someone has defended the portrayal of disability as personal tragedy, it would help me if someone could directly quote that defence. I do not believe anyone has defended that point.

It's true that cultural backgrounds shape how people think about disability, but I see nothing wrong with taking issue with the ideas someone presents. It's not a matter of attacking the person, just trying to educate or influence a persons ideas for the better. As long as it's done respectfully, I see no problem with it.

Bob wrote,

"In short, this is a very healthy discussion where the points of Robin, Donna and Mark all have validity. The question for us as a movement is how we bring these different perspectives into alignment so that we can work together as a community to make things better. Who knows the answer to this one?"

It depends I think. If we're trying to align either the view that disabled people are rude and think the world owes them a favour or the view that disability is a personal tragedy that is lurking in the shadows waiting to get individuals, then we're going to have a hard time aligning these views. Perhaps there's a defence of such views that I haven't heard, but they seem pretty outdated and indefensible to me. This view of disability has been challenged for decades by the disabled community. I really don't think there is room for the kind of portrayal in the post, but if someone wants to defend it, and to defend the part that i'm actually critical of, I would be more than willing to reconsider.

I'll end by quoting a couple of passages from a book I've been reading today. The book is "The Politics of Disablement" by Michael Oliver.

"As far as disability is concerned, if it is seen as a tragedy, then disabled people will be treated as if they are the victims of some tragic happening or circumstance. This treatment will occur not just in everyday interactions but will also be translated into social policies which will attempt to compensate these victims for the tragedies that have befallen them."

"Alternatively, it logically follows that if disability is defined as social oppression, then disabled people will be seen as the collective victims of an uncaring or unknowing society rather than as individual victims of circumstance. Such a view will be translated into social policies geared towards alleviating oppression rather than compensating individuals. It almost goes without saying that at present, the individual and tragic view of disability dominates both social interactions and social policies." (pages 2 and 3)

This was written more than 20 years ago. If we're having this debate today, and particularly among our own community, you have to wonder how far we've come. The main take away point for me is that the portrayal of disability in the post does not just affect personal interactions. I think it's obvious that it does do that. You don't want to befriend, hire, or marry someone you pity or who makes you feel afraid when you look at him or her, but this also absolutely shapes the policies that come into being. Viewing disability as either a personal tragedy or a matter of injustice and social oppression makes a big difference to the kind of responses governments and businesses will have to disability. Personally, I unequivocally want the response that's motivated by the latter view of disability.

Marc

Hello Mark:

Let me start by apologizing for any typing errors I make in this note since I am writing on my phone.

When I refer to a valid perspective, I am referring to a perspective which has a constituency to support it. It does not mean that I agree personally with all of the ideas presented. After all, we had the misfortune of seeing some very undesireable anti gay and racist commentary leading up to our most recent election. While there are unfortunately consistuencies that support these views, I do not and those like minded voted the proponents of those views into second, third pr fourth place, depending on the riding.

I'm not going to go down the road of defending the road you have invited me to take. Instead, I will look at the issue differently. In the disability movement, we often have to take the person as we find them. The blind lawyer or blind PHD student will view the world very differently from the newly blinded person who has lost their job, their family and their ability to do things they used to enjoy immediately after they lost their sight. Those latter folks may view disability in the negative terms Donna describes in their post and for those people at that time, that is truly how some of them may view their circumstances. Should we say as a movement that you are not welcome until you get your ***!!! together or should we try to hear what they have to say and empower them to look at the world differently than they are currently doing? I don't think it is helpful to turn this situation into one where there is two clearly defined camps. Otherwise, the perpetuation of disability as it was 20 years ago will still have traction and we will never get rid of it.

Hi Bob,

I'm not sure there is a disagreement here. If I came across as sounding like I would not want someone who had a negative attitude towards disability to be a part of the disability movement, that was not my intention. I understand that people sometimes have negative attitudes; I myself am not proud of the way I viewed disability ten years ago, so I do not think someone with those views is a bad person and should be excluded or silenced.

That said, I do think there is a difference between someone who is a part of the movement, or who is trying to be a part of the movement, and someone who is a recognized spokesperson for the movement. Without intending to speak for Nayla, my suspicion is that the call for censorship was not directed at an individual expressing a personal view; it was directed at the spokesperson for the AEBC appearing publicly to take a view that contravenes much of what the AEBC stands for. These are two very different situations. So while I agree that we need to be open to different perspectives, I'm not sure that this principle is entirely relevant in the case of the blog post under discussion.

When I expressed skepticism about the possibility of aligning different perspectives, I did not intend to suggest that someone holding a negative view of disability should be prevented from joining the movement. On the contrary, we should welcome such people and try to promote more positive, and I would argue more accurate, ways of thinking about disability among them. I will say, however, that I feel there is no room for someone with negative attitudes to lead the movement. I do not want someone who promotes the personal tragedy understanding of disability to represent me or speak on my behalf. Refer back to the quotes from Oliver for my reasoning. And that, I think, is where the difficulty in aligning such views comes into play.

So far as I can tell, this discussion is not about whether we exclude or include different perspectives in the movement. It seems to me to be about a leader in the community taking a perspective that runs counter to the position traditionally held and widely supported, which ended up causing many to express concerns and discontent with this move.

Hello Mark:

Let me start by saying I strongly agree with you that the leader of a constituency is under much more scrutiny than other individual members of the same movement. They set the direction and vision of the organization often with the assistance of a board and/or staff. The leader is also the public face of the organization and the organization itself is judged based on the actions of the leader. So, as you say, the leader should be careful about what opinions they express and in what form because of this higher level of scrutiny.

Having said all of that though, are we as a community too harsh towards our leaders? Are we too quick to expect perfection from our leaders who are themselves imperfect? How do we identify, train, support and encourage our leaders to perform effectively on our behalf? Frankly speaking, I don't believe that we as a community do any of these things effectively. Leadership skills are instead learned either by trial by fire or through other experiences individuals have outside the community to acquire and develop these skills. While we have had a few effective mentors over the years, there haven't been enough due to factors such as burn-out, changes in priority, the massive workload associated with leading an organization such as this, inconsistencies in the levels of performance and commitment of board members, and the list goes on and on.

If I knew what I now know today, I would *never* have taken on the role of NFB:AE president some 13 years ago now. Then, I was in my fifth year of practising law and I thought I was pretty bright and understood the world and the community pretty well. Well, to be frank, I didn't. This caused me to push too hard too fast to move an agenda forward not leaving enough time for debate, discussion, and for compromises to develop. I thought then that criticisms against my ideas were criticisms of me personally when in most cases, they probaby were not. This is a classic instance of where the leader may have had some ability but because of inappropriate training and mentorship with the community itself, I left after my two years were up with the very clear expectation I would never be back.

As we discuss Donna's posting, we may want to consider how much mentorship, help and guidance each of us can offer her in doing this very difficult job. Donna will make mistakes in this job. Everyone who preceded her did including me. But does the community once again want to chase another leader away?

Thanks for this comment, Bob. I think there are some important insights here, and I appreciate you taking the time to set down your thoughts.

My experience is much more limited than yours, but what I have witnessed is in line with what you describe.

I think we should certainly be more forgiving when mistakes are made in doing what is a very tough job. But I also think that before mistakes can be forgiven, they need to be acknowledged and forgiveness sought.

I echo what Marc and Anthony said regarding this post. I especially agree with what Marc said about disability being the result of various social institutions and societal perceptions, rather than the direct result of a specific condition in and of itself. The general public already fears disability enough as it is; this type of negativity only serves to perpetuate misconceptions about how terrible and frightening having a disability must be.

I disagree entirely with the tenor of this observation. Yes, disability does not discriminate and in a sense we're all subject to a certain "luck of the draw" as to when our turn will come up.

But to refer to those who have a "disability" as 'victims', and to characterize it as an evil lurking monster that waits in the shadows to strike at the most inopportune moment... that, that I cannot countenance. It paints a picture that is considerably more threatening, bleak, and frightening then I think people ought to have of the notion.

Why should the message be, "Count your blessings... by the end of today, you too could be less one eyeball!"? That isn't the point. The point should be more along the lines of, "Count your blessings... and consider whether that sidewalk 'sandwich board' that has fallen over and you just walked around might block the way for the next wheelchair that comes by. And fix it."

While the experience of becoming disabled, or learning to cope with a change in abilities, can be frightening, terrifying, frustrating and generally miserable, I for one do not walk around every day fearing what could come next. Do I ponder, before launching down a ski run, just what life would be like if fate intervened and I found myself not only blind, but also unable to walk thanks to that big tree 400 feet below me? Sure, the thought has crossed my mind before, but that's basic self-preservation and recognition that, in everything we do, there are risks, different possible outcomes, and scenarios we must (or should) weigh. That isn't living life "fearing" that it will happen, or behaving as though it is only a matter of time before the boogie-man strikes me down.

If we all walked around prepared to rebuff what "lurks around the next corner," we'd all be hospitalized and diagnosed with anxiety disorders and paranoia (a disability in and of itself). Sure, be sensitive to the possibility that you too might one day find yourself in anothers' shoes, but for Heaven's sake don't live life in mortal fear of the unknown!

If it happens to you, if you wake up one day with no vision, or are in the wrong place at the wrong time and are hit by an errant falling piece of concrete that paralyzes you, or a gas pump blows up next to you and you lose your hearing in one ear... These are all things that will be disabling and require adjustment, sure. The last thing you would want to hear at that point is, "Ahem, see, just a matter of time.... now what are you gonna do, hot shot?" No, at a time like that, what you would want to be thinking, and what you would want said to you is more along the lines of what Marc posted earlier: "Ok, so you can't walk any longer. That job as a skydiving instructor is probably not ideal. But hey, you can still fly the plane, so it's not a total loss..."

I suppose, in the interest of authenticity, it would only be fair to include the caveat to that statement: "... that is, you WILL be able to fly the plane, once the 22 months of paperwork and medical appeals needed to renew your pilot's license are done with." Nobody said it would be easy. The systems in place just do not, in most cases, accommodate these differences in ability. But cross those bridges when you come to them; not before.

While I do think it's important for people to understand that disability can potentially affect everyone, I disagree pretty strongly with the way it's characterized in this post.

First off, in my opinion, disability isn't some sort of entity that's prowling the streets looking for victims, it's the result of social institutions being designed in such a way that certain people are marked off as different and excluded from fully participating in society.

I think it's a mistake to talk about disability as making a person its "victim", to contrast disability with health, and to say disability "lurks in the shadows". These are the kinds of attitudes, I believe, that make it much harder for people whose bodies do not look or respond in typical ways to participate in society.

True, disability can affect anyone, but acknowledging this doesn't have to be about fear; it can be about recognizing that differences in how our bodies look and function are entirely natural parts of what it is to be human. The response to the recognition should not be anxiety and fear, but instead the creation of social institutions that are inclusive of differences so that when a person experiences changes in how her body looks or functions, as most people will, this doesn't have to be perceived as scary or tragic and doesn't result in exclusion from full participation in society.

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