This is one of my occasional forays into disability issues on this Board.

https://www.npr.org/2023/03/04/1161169017/disability-activist-judy-heumann-dead-75

There are, to be sure, some differences between what blind people and other disability rights activists want, but we do share a common goal. The following quote taken from the top of the article sums up how I feel as a blind person, though it comes from a woman who spent her life in a wheelchair.

"Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for
example," she said. "It is not a tragedy to me that I'm living in a wheelchair."

And it is not a tragedy to me that I am living with no sight. Thank you, Judy!

Wow. What a beautiful attitude. I hope society will realize and increasingly fulfill their role to provide the things needed so everyone can lead their lives the best possible way. She was indeed a hero. Disabled people of all kinds contribute their share to society and then some.

Thanks for this. It's an important thing to think about.

Agreed, wholeheartedly.

"Disability only becomes a tragedy when society fails to provide the things we need to lead our lives — job opportunities or barrier-free buildings, for example," she said. "It is not a tragedy to me that I'm living in a wheelchair."

COMMENT: There is an ambiguity here. I take the above statement to mean something like the following:

Disability only becomes a tragedy *for the disabled* when society fails to provide the things the disabled need to lead their lives. It is not a tragedy to me that I am living in a wheelchair (or living with no sight), IF society is providing reasonable accommodations.

In short, it is only society's failure to provide reasonable accommodations that creates a tragedy for the disabled, and not the disability itself.

If indeed I have interpreted Ms. Heumann's statement correctly, it follows that there is a moral burden on society to reasonably try to prevent such tragedy by putting appropriate accommodations in place. That seems to be the bottom line in this thread, with which I agree with wholeheartedly.

However, here is where I have a problem: It seems disingenuous, not to mention ill-advised pragmatically, to place the 'burden of tragedy' entirely upon society, while failing to acknowledge that the disability itself--apart from society's reaction--is itself 'tragic.' For the most part, this element of the 'tragedy' calculus (that is, the disability or problem itself) might manifest itself through any number of possible 'disabling' contingencies that might occur to a given person in life. Many of such 'disabling' life problems would also arguably NOT be 'tragedies' if 'appropriate' accommodations were put in place.

But my main point is not this worry, but the following: When the disabled fail to acknowledge that there is tragedy per se in being blind, or confined to a wheelchair, there is a logical disconnect when they then place the burden on society to accommodate the disability. If it is O.K. for you to be blind, or Ms. Heumann to be confined to a wheelchair--because after all such conditions are not per se tragic), why should it not also be O.K. for society?

The reality of the situation (I think) is that accommodations for the severely disabled are motivated just because such severe disabilities are viewed as per se tragic. Eliminating or minimizing that fact undermines rather than enhances the political will to address such disabilities through accommodations.

Here is an extreme, but real, example: Deaf parents have a deaf child that can be completely 'cured' through a cochlear implant. The parents refuse the procedure because they insist that deafness is not really a disability (tragedy) at all but simply a part of 'who a person is." Instead, they insist upon social accommodations. Here is an example where the "tragedy" is clearly misplaced. Intuitively, 'deafness' is a tragedy deserving of accommodations *when such tragedy cannot be directly remedied.* If it is only deemed a tragedy because of society's failure to accommodate the effect, something important is missing.

Questions for you:

(1) Are you prepared to call your personal blindness a tragedy, notwithstanding any consideration of accommodations?
(2) Can you (and other disabled people) reasonably expect accommodations when you are unwilling to make the disability tragic in itself? If so, How so?
(3) So, aren't there really two potential tragedies here; the disability itself, and the moral failure of society to respond to it?
(4) Isn't Heumann's statement--"Disability only becomes a tragedy when society fails to provide the things we need to lead our lives," a nice rhetorical cliché, but not literally correct?

I have comments on your paragraphs, and I will do my best to try to answer your questions. First, however, let me quote you a brief lyric from a 1990s rap song:

"You know where it endes
And Yo! It usually depends
Upon where you start."
--"What It's Like," Everlast, 1998

As you go through my response, keep in mind the above lines for they are key to understanding where I and those who are seeking civil rights for the disabled are coming from.

Henry Bemis Wrote:
-------------------------------------------------------
> "Disability only becomes a tragedy when society
> fails to provide the things we need to lead our
> lives — job opportunities or barrier-free
> buildings, for example," she said. "It is not a
> tragedy to me that I'm living in a wheelchair."
>
> COMMENT: There is an ambiguity here. I take the
> above statement to mean something like the
> following:
>
> Disability only becomes a tragedy *for the
> disabled* when society fails to provide the things
> the disabled need to lead their lives. It is not a
> tragedy to me that I am living in a wheelchair (or
> living with no sight), IF society is providing
> reasonable accommodations.
>
> In short, it is only society's failure to provide
> reasonable accommodations that creates a tragedy
> for the disabled, and not the disability itself.

So far so good.
>
> If indeed I have interpreted Ms. Heumann's
> statement correctly, it follows that there is a
> moral burden on society to reasonably try to
> prevent such tragedy by putting appropriate
> accommodations in place. That seems to be the
> bottom line in this thread, with which I agree
> with wholeheartedly.
>
> However, here is where I have a problem: It seems
> disingenuous, not to mention ill-advised
> pragmatically, to place the 'burden of tragedy'
> entirely upon society, while failing to
> acknowledge that the disability itself--apart from
> society's reaction--is itself 'tragic.' For the
> most part, this element of the 'tragedy' calculus
> (that is, the disability or problem itself) might
> manifest itself through any number of possible
> 'disabling' contingencies that might occur to a
> given person in life. Many of such 'disabling'
> life problems would also arguably NOT be
> 'tragedies' if 'appropriate' accommodations were
> put in place.
>
> But my main point is not this worry, but the
> following: When the disabled fail to acknowledge
> that there is tragedy per se in being blind, or
> confined to a wheelchair, there is a logical
> disconnect when they then place the burden on
> society to accommodate the disability. If it is
> O.K. for you to be blind, or Ms. Heumann to be
> confined to a wheelchair--because after all such
> conditions are not per se tragic), why should it
> not also be O.K. for society?

Well, let me turn the tables a bit. If you were born in to a society where everybody had the function of reading minds which you didn't have, wouldn't it be a tragedy because you couldn't read minds while everybody else could. When other members of that mind-reading society saw you walking by, they'd look at you and think, or say out loud: "There goes that poor HB! He cannot read minds like we can. Maybe we should try to create something that would allow him to read our minds like we can read his. I mean, he's so different from us. Isn't it a tragedy." And the thought would steer away from trying to assist you in trying to gain social acceptance to trying to figure out a way to make it possible for you to read minds.

Farfetched, you say? Many people with muscular distrophy were not happy with the Jerry Lewis telethons and all the money they raised. Why? Because practically all of that money went in to building new labs and buildings and facilities to try to cure the disease (which they haven't found a cure for yet) and very little was going to assist those who were strugglinb with muscular distrophy now to gain full entrance into society. Many people who could have been assisted in learning how to live with their disease and how to be full members of society were instead left to die while waiting for a cure that has never come.

I don't mean to begrudge those who are looking to cures for muscular distrophy; neither do I mean to begrudge those who are looking into cures for blindness or polio (we have a preventative vaccine for that now but no cure) or any number of other disabling diseases. But the question should be asked: What about those who have those diseases now. Shouldn't we be spending more money training them on how to live with their disabilities *and* making sure that they have as fair a shake as everybody else in society to gain employment, raise a family, etc.?
>
> The reality of the situation (I think) is that
> accommodations for the severely disabled are
> motivated just because such severe disabilities
> are viewed as per se tragic. Eliminating or
> minimizing that fact undermines rather than
> enhances the political will to address such
> disabilities through accommodations.

Now I'm going to contradict something I've said in the above paragraphs. If you read the whole article at the provided link, you will find that society was *not* very accommodating to Ms. Heumann and her disability; she was turned away from school as a child because her wheelchair was deemed as a "fire hazard"; when the 1973 Rehabilitation Act was passed with Section 504, neither the Nixon nor the Ford administrations wrote rules to enforce it, and the Carter administration only did so after public protest by disability civil rights activits led by Ms. Heumann in Oakland, California, in 1977; and other areas.

Society in and of itself will not look at disabled people and say "How can we help them with their tragic loss." Some of its members may help some but only if it doesn't mean they have to give up any of what they have. For example, architects are willing to support the rights of the disabled as long as they don't have to create or modify buildings for them. So expecting society to look at the tragedy of a disability and make the situation better for the disabled is wishful thinking at best.
>
> Here is an extreme, but real, example: Deaf
> parents have a deaf child that can be completely
> 'cured' through a cochlear implant. The parents
> refuse the procedure because they insist that
> deafness is not really a disability (tragedy) at
> all but simply a part of 'who a person is."
> Instead, they insist upon social accommodations.
> Here is an example where the "tragedy" is clearly
> misplaced. Intuitively, 'deafness' is a tragedy
> deserving of accommodations *when such tragedy
> cannot be directly remedied.* If it is only
> deemed a tragedy because of society's failure to
> accommodate the effect, something important is
> missing.

I can't find it now, but I remember a poll done back in the 1990s that was reported by NPR. It was a poll of disabled parents, and it turned out that a majority of them wanted to have their offspring have the same disability they did. To me, poll results like that make sense--especially when you realize that able-bodied fathers who are carpenters want their sons to grow up to be carpenters, too. In short, we want our offspring to be exactly like us, even though both history and the genetic sciences say that this isn't likely to happen.

A personal experience that my brother (who is also blind) and I had back in 1968 illustrates this point very well. My late father was a carpenter. When I was six years old and my brother was four, he set us down at a table with a hammer, a nail, and a piece of wood for each of us. Our job, though we didn't want to do it, was to hammer the nail into the piece of wood. Both he and my mom watched our progress. While both my brother and I were able to get the end of the nail in to the piece of wood, we couldn't get the whole nail in to it. In addition, we spent much time hitting our own other hands (as we tried to hold the nail in place). Both of our parents' concluded that my brother and I would never be good carpenters, and my dad had to learn to live with the fact that neither one of his sons would be following in his footsteps. (It was also the results of this experiment that convinced my late mom that the only way both my brother and I would ever have a chance in society was if we became more intelligent than the vast majority of our sighted counterparts).

There is one other point about viewing one's disability as a tragedy that I will make here. If you view yourself as a tragedy because of a condition that you have that is not shared by others, then you are lowering your personal expectations of yourself. You cannot say "I'm going to try to find work even though I am tragically blind." The vast majority of potential employers are going to turn you away (they need someone who can actually do the job and not some poor blind schmuck who thinks that his sight loss is a tragedy). Those who are interested in hiring you often a) fail to recognize your potential or b) have some nefarious use for you in mind (like paying you below the minimum wage and absconding with the rest because they figure you won't complain.)

With all of that said, here are my answers to your specific questions.
>
> Questions for you:
>
> (1) Are you prepared to call your personal
> blindness a tragedy, notwithstanding any
> consideration of accommodations?

No. While it is true that there are certain things that I cannot do because I am blind, there are many others that I can do, some with and others without, accommodations.
>
> (2) Can you (and other disabled people) reasonably
> expect accommodations when you are unwilling to
> make the disability tragic in itself? If so, How
> so?

Yes. As I have pointed out above, society is only willing to go so far in helping people with long-term tragedies, and how far it is voluntarily willing to go is usually not far enough in terms of necessary accommodations.
>
> (3) So, aren't there really two potential
> tragedies here; the disability itself, and the
> moral failure of society to respond to it?

I'll give you a maybe on that response. As I've just stated (and stated before), I cannot afford to view my personal disability as a tragedy. Society is not going to be able or willing to meet all of my accommodation needs on those terms *and* it will leave me depressed for the rest of my life, however long that may be.

I put the "maybe" here because there are some disabilities that are so profound, particularly developmental disabilities, that may force the person with them to feel that he/she is a tragedy, no matter how much society assists them. Most of these people wind up being wards of the state and institutionalized in state or private places, including places otherwise available only to senior citizens.
>
> (4) Isn't Heumann's statement--"Disability only
> becomes a tragedy when society fails to provide
> the things we need to lead our lives," a nice
> rhetorical cliché, but not literally correct?

In many, perhaps most cases, Ms. Heumann's summation is absolutely correct. There is good evidence that people using wheelchairs actually make good accountants and other desk positions. But many managers will never know this if they don't put in ramps and elevators for the wheelchair users to get to their desks!

Finally, going back to the song lyrics I placed on top of this response, how you view the demands by the disabled for equal access will depend on how you see their place in society and whether, like their able-bodied counterparts, they will be able to rise above that place. Ms. Heumann did, and I have a lot of respect of her for doing that, and what she did and stood for assisted alot of disabled people, whether or not they used wheelchairs.

"Well, let me turn the tables a bit. If you were born in to a society where everybody had the function of reading minds which you didn't have, wouldn't it be a tragedy because you couldn't read minds while everybody else could. When other members of that mind-reading society saw you walking by, they'd look at you and think, or say out loud: "There goes that poor HB! He cannot read minds like we can. Maybe we should try to create something that would allow him to read our minds like we can read his. I mean, he's so different from us. Isn't it a tragedy." And the thought would steer away from trying to assist you in trying to gain social acceptance to trying to figure out a way to make it possible for you to read minds."

COMMENT: Doesn't this suggest a 'two-pronged' (both positive) response to the disabled: (1) To address the disability directly; and (2) to address the disabled's need for acceptance within society or some social group. It would seem that some balance is appropriate.
_______________________________________________

"Farfetched, you say? Many people with muscular distrophy were not happy with the Jerry Lewis telethons and all the money they raised. Why? Because practically all of that money went in to building new labs and buildings and facilities to try to cure the disease (which they haven't found a cure for yet) and very little was going to assist those who were strugglinb with muscular distrophy now to gain full entrance into society. Many people who could have been assisted in learning how to live with their disease and how to be full members of society were instead left to die while waiting for a cure that has never come."

"I don't mean to begrudge those who are looking to cures for muscular distrophy; neither do I mean to begrudge those who are looking into cures for blindness or polio (we have a preventative vaccine for that now but no cure) or any number of other disabling diseases. But the question should be asked: What about those who have those diseases now. Shouldn't we be spending more money training them on how to live with their disabilities *and* making sure that they have as fair a shake as everybody else in society to gain employment, raise a family, etc.?"

COMMENT: Again, as you seem to also be saying, this is a problem of appropriate balance, and a justified frustration when not enough attention is given to (2) above, rather than (1). I am sympathetic to this objection. Moreover, I would add that the disabled (in any given context) should have an important voice in how this balance is determined.
________________________________________________

Now I'm going to contradict something I've said in the above paragraphs. If you read the whole article at the provided link, you will find that society was *not* very accommodating to Ms. Heumann and her disability; she was turned away from school as a child because her wheelchair was deemed as a "fire hazard"; when the 1973 Rehabilitation Act was passed with Section 504, neither the Nixon nor the Ford administrations wrote rules to enforce it, and the Carter administration only did so after public protest by disability civil rights activits led by Ms. Heumann in Oakland, California, in 1977; and other areas.

COMMENT: In all fairness here--but not to excuse pure stupidity or a gross lack of empathy--I would point out that accommodating a disabled person is often difficult and confusing. For example, a teacher of chemistry who is suddenly faced with a blind person in her high school or college class might well have an initially justified reaction of "How am I going to manage this." There may not seem to be a way at all to reasonably accommodate this student without undue constraints of all kinds, involving everyone in the class as well as the teacher and disabled person herself. A teacher might well honestly feel, in good faith, that his just cannot be done.

It seems to me that the disabled need to realize that in many difficult contexts the failure to accommodate a disabled person is not always due to a lack of empathy or a cavalier attitude. There needs to be established programs, instruction, and methodology to assist teachers, and others, as to how to deal with such circumstances. I assume that to some extent this is being done.
_____________________________________________

Society in and of itself will not look at disabled people and say "How can we help them with their tragic loss." Some of its members may help some but only if it doesn't mean they have to give up any of what they have. For example, architects are willing to support the rights of the disabled as long as they don't have to create or modify buildings for them. So expecting society to look at the tragedy of a disability and make the situation better for the disabled is wishful thinking at best.

COMMENT: I don't doubt this. Empathy is much easier when it doesn't hit home. That is why there needs to be a 'social conscience' that is formalized through the establishment of legal rights and related laws. But it seems to me that it does not aid the disabled by being too cynical about this. I truly believe--perhaps naively--that most people *do* care about the disabled, and *do* want to help. Progress toward accommodations bares that out, however, imperfectly.
___________________________________________

"I can't find it now, but I remember a poll done back in the 1990s that was reported by NPR. It was a poll of disabled parents, and it turned out that a majority of them wanted to have their offspring have the same disability they did. To me, poll results like that make sense--especially when you realize that able-bodied fathers who are carpenters want their sons to grow up to be carpenters, too. In short, we want our offspring to be exactly like us, even though both history and the genetic sciences say that this isn't likely to happen."

COMMENT: I just don't get this at all! It is one thing to want a child to 'follow in one's footsteps,' and quite another to want a child to 'suffer' the same disabilities. Those disabled who have such extreme views seem to me to have lost perspective. And it seems to relate to an insistence that the disability itself is not the problem, but rather the reaction to it. But the disability *is* the problem. It is not *all* of the problem, but at bottom it is the main problem. Honestly, I do not know how one can view it otherwise--whether disabled or not.
___________________________________________

"There is one other point about viewing one's disability as a tragedy that I will make here. If you view yourself as a tragedy because of a condition that you have that is not shared by others, then you are lowering your personal expectations of yourself. You cannot say "I'm going to try to find work even though I am tragically blind." The vast majority of potential employers are going to turn you away (they need someone who can actually do the job and not some poor blind schmuck who thinks that his sight loss is a tragedy). Those who are interested in hiring you often a) fail to recognize your potential or b) have some nefarious use for you in mind (like paying you below the minimum wage and absconding with the rest because they figure you won't complain.)"

COMMENT: That is a great point! The word "tragedy" is like the word "pity." They are laced with negative connotations, especially psychological. I totally get why a disabled person would react against the use these words in the context of their disability. But we can preserve my point by softening this by changing "tragedy" to "unfortunate" and "pity" to "empathy." With such a change, my point in this thread would be for the disabled not to lose sight of the fact that regardless of accommodations, any disability remains inherently "unfortunate" and not just different. It is this 'unfortunate' part of being disabled that drives empathy, drives social consciousness, and at the end of the day drives accommodations. At least that is the way it seems to me.
____________________________________

> (3) So, aren't there really two potential
> tragedies here; the disability itself, and the
> moral failure of society to respond to it?

I'll give you a maybe on that response. As I've just stated (and stated before), I cannot afford to view my personal disability as a tragedy. Society is not going to be able or willing to meet all of my accommodation needs on those terms *and* it will leave me depressed for the rest of my life, however long that may be.

COMMENT: Well said! Nonetheless, I am reminded of Stephen Hawking, who suffered from ALS for most of his adult life. Clearly the initial diagnosis was "tragic" in every sense of the word. I suspect that when you first realized that you were going blind you experienced a similar sense that such a prognosis was tragic in a very personal way. In Stephen Hawking's case, he had every accommodation money could buy, coupled with the highest level of professional accomplishment, wealth, and fame. Did all that take away the "tragedy" of his ALS that plagued him throughout his life? Did your own subsequent accomplishments take away the tragedy--or unfortunateness--of your being blind?

In either case, it is not for me to say. But when I think about Hawking and am inspired by what he accomplished *scientifically*, the context of his ALS does not simply go away. The inspiration he projects comes not from his success in making something originally tragic not tragic anymore, but in rising above such tragedy. From Judy Neumann's statement in your OP, for Hawking at least, there was no tragedy at all, because all of his accommodation needs were met. Yet, when I see a photo of him later in life, with his useless, dilapidated body, slumping over in his high-tech wheelchair, it is hard for me to view the matter in this way.

Thanks for this exchange, blindguy. I am going to watch Ms. Heumann's speech in its entirety and think about all this much more. Notwithstanding any perceived 'pointedness' on my part, when it comes to experiences of the disabled, and any related analysis of facts or psychology, I defer to you. In this context, I am only seeking understanding.

Henry Bemis Wrote:
-------------------------------------------------------
> "Well, let me turn the tables a bit. If you were
> born in to a society where everybody had the
> function of reading minds which you didn't have,
> wouldn't it be a tragedy because you couldn't read
> minds while everybody else could. When other
> members of that mind-reading society saw you
> walking by, they'd look at you and think, or say
> out loud: "There goes that poor HB! He cannot read
> minds like we can. Maybe we should try to create
> something that would allow him to read our minds
> like we can read his. I mean, he's so different
> from us. Isn't it a tragedy." And the thought
> would steer away from trying to assist you in
> trying to gain social acceptance to trying to
> figure out a way to make it possible for you to
> read minds."
>
> COMMENT: Doesn't this suggest a 'two-pronged'
> (both positive) response to the disabled: (1) To
> address the disability directly; and (2) to
> address the disabled's need for acceptance within
> society or some social group. It would seem that
> some balance is appropriate.

I would agree with you on this point.
> _______________________________________________
>
> "Farfetched, you say? Many people with muscular
> distrophy were not happy with the Jerry Lewis
> telethons and all the money they raised. Why?
> Because practically all of that money went in to
> building new labs and buildings and facilities to
> try to cure the disease (which they haven't found
> a cure for yet) and very little was going to
> assist those who were strugglinb with muscular
> distrophy now to gain full entrance into society.
> Many people who could have been assisted in
> learning how to live with their disease and how to
> be full members of society were instead left to
> die while waiting for a cure that has never
> come."
>
> "I don't mean to begrudge those who are looking to
> cures for muscular distrophy; neither do I mean to
> begrudge those who are looking into cures for
> blindness or polio (we have a preventative vaccine
> for that now but no cure) or any number of other
> disabling diseases. But the question should be
> asked: What about those who have those diseases
> now. Shouldn't we be spending more money training
> them on how to live with their disabilities *and*
> making sure that they have as fair a shake as
> everybody else in society to gain employment,
> raise a family, etc.?"
>
> COMMENT: Again, as you seem to also be saying,
> this is a problem of appropriate balance, and a
> justified frustration when not enough attention is
> given to (2) above, rather than (1). I am
> sympathetic to this objection. Moreover, I would
> add that the disabled (in any given context)
> should have an important voice in how this balance
> is determined.

I *mostly* agree with you here. My only quibble is that the disabled community should be the primary voice for determining this balance. Why? Because, unlike their able-bodied counterparts, they/we are the ones who are going to have to live with the results of that balance.
> ________________________________________________
>
> Now I'm going to contradict something I've said in
> the above paragraphs. If you read the whole
> article at the provided link, you will find that
> society was *not* very accommodating to Ms.
> Heumann and her disability; she was turned away
> from school as a child because her wheelchair was
> deemed as a "fire hazard"; when the 1973
> Rehabilitation Act was passed with Section 504,
> neither the Nixon nor the Ford administrations
> wrote rules to enforce it, and the Carter
> administration only did so after public protest by
> disability civil rights activits led by Ms.
> Heumann in Oakland, California, in 1977; and other
> areas.
>
> COMMENT: In all fairness here--but not to excuse
> pure stupidity or a gross lack of empathy--I would
> point out that accommodating a disabled person is
> often difficult and confusing. For example, a
> teacher of chemistry who is suddenly faced with a
> blind person in her high school or college class
> might well have an initially justified reaction of
> "How am I going to manage this." There may not
> seem to be a way at all to reasonably accommodate
> this student without undue constraints of all
> kinds, involving everyone in the class as well as
> the teacher and disabled person herself. A
> teacher might well honestly feel, in good faith,
> that this just cannot be done.
>
> It seems to me that the disabled need to realize
> that in many difficult contexts the failure to
> accommodate a disabled person is not always due to
> a lack of empathy or a cavalier attitude. There
> needs to be established programs, instruction, and
> methodology to assist teachers, and others, as to
> how to deal with such circumstances. I assume that
> to some extent this is being done.

You assume correctly, particularly with regard to public education. For specifically the blind, every (or nearly every) public school has a person on staff who is a resource teacher. Sometimes, a single district hires one or more resource teachers for all of its schools--and these are called itinerant teachers. In any case, the primary purposes of these teachers are to 1) provide support and instructions to the blind students on blindness skills (skills needed to succeed in life as a blind person); and 2) provide regular classroom teachers (such as the chemistry teachers in your example) with resources and assistance when the latter come to them and say, "I have a new blind student in my class. How can I help him/her to fully participate."

I should probably stop here and explain IDEA. Poster Summer has probably already dealt with this, but it's an acronym that means Individually Determined Education" and I can't remember what the A stands for. In practice, it is where the parent of a blind or disabled child has a meeting with their public school district representatives to draw up a plan for educating their blind or disabled child. If I remember correctly, the law creating IDEA was passed in 1975 and its goal was to assist in mainstreaming disabled students into public classrooms.
> _____________________________________________
>
> Society in and of itself will not look at disabled
> people and say "How can we help them with their
> tragic loss." Some of its members may help some
> but only if it doesn't mean they have to give up
> any of what they have. For example, architects are
> willing to support the rights of the disabled as
> long as they don't have to create or modify
> buildings for them. So expecting society to look
> at the tragedy of a disability and make the
> situation better for the disabled is wishful
> thinking at best.
>
> COMMENT: I don't doubt this. Empathy is much
> easier when it doesn't hit home. That is why
> there needs to be a 'social conscience' that is
> formalized through the establishment of legal
> rights and related laws. But it seems to me that
> it does not aid the disabled by being too cynical
> about this. I truly believe--perhaps
> naively--that most people *do* care about the
> disabled, and *do* want to help. Progress toward
> accommodations bares that out, however,
> imperfectly.
> ___________________________________________
>
> "I can't find it now, but I remember a poll done
> back in the 1990s that was reported by NPR. It was
> a poll of disabled parents, and it turned out that
> a majority of them wanted to have their offspring
> have the same disability they did. To me, poll
> results like that make sense--especially when you
> realize that able-bodied fathers who are
> carpenters want their sons to grow up to be
> carpenters, too. In short, we want our offspring
> to be exactly like us, even though both history
> and the genetic sciences say that this isn't
> likely to happen."
>
> COMMENT: I just don't get this at all! It is one
> thing to want a child to 'follow in one's
> footsteps,' and quite another to want a child to
> 'suffer' the same disabilities. Those disabled
> who have such extreme views seem to me to have
> lost perspective. And it seems to relate to an
> insistence that the disability itself is not the
> problem, but rather the reaction to it. But the
> disability *is* the problem. It is not *all* of
> the problem, but at bottom it is the main problem.
> Honestly, I do not know how one can view it
> otherwise--whether disabled or not.

Here is the area where the lyrics I quoted from at the top of my initial response matter most. It *always* depends on your starting point. I get the impression that you believe that everything you have is perfect (or good) because it works for you. It does not, or has not, occurred to you that what you have for yourself may not be the best for everyone else, nor what they want. The reason that a disabled person might want a child who has their disability is the belief (rightly or wrongly) that they can more easily relate to or teach somebody who is just like them and who (presumably) has the same problems they do.

But, you might argue, "Our offspring don't necessarily want to hear what I say or learn from my experiences." And I'd say you would be right. However, we humans, probably for survival reasons and very much like the rest of the animal kingdom, tend to think in the short term and from our own perspectives. So I think it's natural, though certainly short-sighted, for a disabled person to wish to have a child with his/her disability.
> ___________________________________________
>
> "There is one other point about viewing one's
> disability as a tragedy that I will make here. If
> you view yourself as a tragedy because of a
> condition that you have that is not shared by
> others, then you are lowering your personal
> expectations of yourself. You cannot say "I'm
> going to try to find work even though I am
> tragically blind." The vast majority of potential
> employers are going to turn you away (they need
> someone who can actually do the job and not some
> poor blind schmuck who thinks that his sight loss
> is a tragedy). Those who are interested in hiring
> you often a) fail to recognize your potential or
> b) have some nefarious use for you in mind (like
> paying you below the minimum wage and absconding
> with the rest because they figure you won't
> complain.)"
>
> COMMENT: That is a great point! The word "tragedy"
> is like the word "pity." They are laced with
> negative connotations, especially psychological. I
> totally get why a disabled person would react
> against the use these words in the context of
> their disability. But we can preserve my point by
> softening this by changing "tragedy" to
> "unfortunate" and "pity" to "empathy." With such a
> change, my point in this thread would be for the
> disabled not to lose sight of the fact that
> regardless of accommodations, any disability
> remains inherently "unfortunate" and not just
> different. It is this 'unfortunate' part of being
> disabled that drives empathy, drives social
> consciousness, and at the end of the day drives
> accommodations. At least that is the way it seems
> to me.

I will go halfway with you on this one. I think empathy for others, whether they are disabled or not, is preferred over pity. I would, however, draw the line at the use of the word "unfortunate," as that word, though weaker than tragic, still has negative connotations, especially for the blind person who attempts to use it to describe him/herself. If you want to have equal access to society, you cannot go around telling others how unfortunate it is that you are blind; rather, you must be prepared to say how you will be able to accomplish the same things that your sighted peers do though perhaps by different methods.

It is good for all, both blind and sighted alike, to have a social consciousness--it can, in some instances, assist in the lives of some individuals. But make no mistake. While there have been some changes made, the system under which we all live must be changed to more fully recognize that blind and other disabled people can live a full and happy life.
> ____________________________________
>
> > (3) So, aren't there really two potential
> > tragedies here; the disability itself, and the
> > moral failure of society to respond to it?
>
> I'll give you a maybe on that response. As I've
> just stated (and stated before), I cannot afford
> to view my personal disability as a tragedy.
> Society is not going to be able or willing to meet
> all of my accommodation needs on those terms *and*
> it will leave me depressed for the rest of my
> life, however long that may be.
>
> COMMENT: Well said! Nonetheless, I am reminded of
> Stephen Hawking, who suffered from ALS for most of
> his adult life. Clearly the initial diagnosis was
> "tragic" in every sense of the word. I suspect
> that when you first realized that you were going
> blind you experienced a similar sense that such a
> prognosis was tragic in a very personal way. In
> Stephen Hawking's case, he had every accommodation
> money could buy, coupled with the highest level of
> professional accomplishment, wealth, and fame.
> Did all that take away the "tragedy" of his ALS
> that plagued him throughout his life? Did your
> own subsequent accomplishments take away the
> tragedy--or unfortunateness--of your being blind?

First, a quick note on my background. I was born blind. While I had some light and shadow perception until the 1990s, all of that is gone now. Because my residual sight when I was young was so limited and because those who taught me insisted that I learn to do things the way that totally blind people did, I was as prepared as I could be when I gradually lost what little sight I had. I read braille well and I knew how to use the long white cane to find out what was ahead of me. I really didn't miss what I could barely see in the first place.

That said, you are partially correct. When a person who has been sighted loses all of his/her sight, it seems like a tragedy to them because they don't know how to do what they could do before using sight. And *if* they never learn blindness skills, then that sense of tragedy or unfortunateness may come to rule or dominate their life and outlook. However, if you become proficient in the skills of being blind, then many of the negative consequences of the loss of sight go away for you
>
>
> In either case, it is not for me to say. But when
> I think about Hawking and am inspired by what he
> accomplished *scientifically*, the context of his
> ALS does not simply go away. The inspiration he
> projects comes not from his success in making
> something originally tragic not tragic anymore,
> but in rising above such tragedy. From Judy
> Neumann's statement in your OP, for Hawking at
> least, there was no tragedy at all, because all of
> his accommodation needs were met. Yet, when I see
> a photo of him later in life, with his useless,
> dilapidated body, slumping over in his high-tech
> wheelchair, it is hard for me to view the matter
> in this way.

The big question (and I haven't read the late Mr. Hawking's thoughts on this) is whether he viewed himself as being unfortunate or a tragedy. My guess is that he didn't, though others did. I would argue that if Mr. Hawking had allowed himself to think about how unfortunate he was compared to able-bodied people, he would have been unable to come up with the many scientific theories and explanations that he did.
>
> Thanks for this exchange, blindguy. I am going to
> watch Ms. Heumann's speech in its entirety and
> think about all this much more. Notwithstanding
> any perceived 'pointedness' on my part, when it
> comes to experiences of the disabled, and any
> related analysis of facts or psychology, I defer
> to you. In this context, I am only seeking
> understanding.

And I enjoy responding to your posts. For though we may agree on some things and disagree on others, it is always important to keep an open mind.



Edited 1 time(s). Last edit at 03/07/2023 05:16PM by blindguy.

The big question . . . is whether he [Hawking] viewed himself as being unfortunate or a tragedy.

COMMENT: No one, least of all me, would suggest that a disabled person's *life* or very *Being* was a tragedy (or unfortunate) simply because of a disability. Such a position would be offensive in the extreme. Rather, it is the *disability* and its effects that are (arguably) a tragedy (or unfortunate). This is an important distinction in this discussion.

In looking back upon his life, I suspect (but of course am not sure) that Hawking would view his life as a great success--as we all would--but still insist that having ALS all his life was nonetheless a tragedy (or minimally unfortunate). He might think, for example, how his scientific achievements might have been even more profound, and his personal life even more rich and meaningful, had he not been so disabled. There is nothing wrong or inconsistent with such thinking and reflection.

When Ms. Heumann states that the 'tragedy' of disability only occurs if society fails to provide accommodations, she undermines (in my view) an important component of a disabled person's accomplishments; that they were able to accomplish what they did despite having such disability. Do the disabled really want to dismiss or minimize this component of their life accomplishment? Perhaps, but again it seems to me that the inspiration felt by those that are non-disabled when they encounter such 'heroes' is in large part what motivates public support for accommodations.

Henry Bemis wrote in part:

"When Ms. Heumann states that the 'tragedy' of disability only occurs if society fails to provide accommodations, she undermines (in my view) an important component of a disabled person's accomplishments; that they were able to accomplish what they did despite having such disability. Do the disabled really want to dismiss or minimize this component of their life accomplishment? Perhaps, but again it seems to me that the inspiration felt by those that are non-disabled when they encounter such 'heroes' is in large part what motivates public support for accommodations."

I think that Mr. Bemis should be reminded that Ms. Humanne did not win her accommodations through the good will of the public. In many cases, she had to go to court to assert her rights; and in others, she had to go to Congress and engage in the legislative process; and, in at least one case, she had to take over a university's administration office in Oakland, California, to gain the rights she believed she deserved.

There is something else that I need to bring up here because of one of your other responses. A very good case can be made that discrimination against the disabled occurs precisely because they are viewed as being unfortunate or a tragedy. The argument here (and the National Federation of the blind [NFB--another blind civil rights group in the u.s.] has used this argument successfully in court cases in the past) is that when a person's disability is viewed as being tragic or unfortunate by say a potential employer, that person is arguably less likely to get the sought-after position he/she is seeking with that employer. Why? Because *viewing* the disability as being either a tragedy or unfortunate inclines the potential employer to look down on that person and treat him/her as being unequal to other job candidates, even though the disabled person may be better qualified for the position than the able-bodied candidate that was ultimately hired.

Here is a link to a presentation the late Ms. Heumann gave to the American Council of the Blind (ACB) at last year's national convention. This speech will, I think, amplify some of the answers I gave to Henry Bemis (see above) about why the disabled should not view their situations as being tragic and why they/we cannot wait for society to provide us accommodations. The speech and questions run about 45 minutes.

https://www.youtube.com/watch?v=TVgcdvqByH4

The reference to Durward is to the late Durward K. McDaniel, one of the founders of the ACB, back in 1960.

Watched the video and was very impressed by Ms. Heumann as a person and advocate.

Some specific observations:

(1) The whole video drove home the personal message--as demonstrated in this thread--that I tend to get caught up in the logical, philosophical aspects of an issue while neglecting, or inadvertently dismissing, the power and poignancy of the more central "human" point. This is certainly the case here when being introduced to the historical and current "front lines" of the Disability Rights Movement.

Clearly, there is a perspective that you, Ms. Heumann, and others of the disabled community have that transcends protracted intellectual (or political) debate: There is real discrimination going on every day, and actual lives being significantly affected.

(2) I was impressed by Ms. Heumann's passionate discussion of the importance of the political landscape, especially voting and judgeships across the country. I sensed general optimism-- and no cynicism--as to the dispositions of people in general to support disability rights when presented with the issue and reasonable accommodation proposals.

Finally, mention was made of her book, *Being Heumann."

https://www.amazon.com/Being-Heumann-Unrepentant-Disability-Activist/dp/0807002801/ref=sr_1_4?crid=4TB350ALDRIC&keywords=Being+Human&qid=1678215919&s=books&sprefix=being+human%2Cstripbooks%2C145&sr=1-4

I'm going to read it.

Anyway, great thread. Thanks for sharing.

That is indeed a very clever book title.

I enjoyed reading your interesting discussion, blindguy and Henry Bemis.

Thanks for posting this, blindguy.

The CBC here in Canada also covered this in an article here:

https://www.cbc.ca/news/world/judy-heumann-obit-1.6768966

Excerpts:

"Beyond all of the policy making and legal battles that she helped win and fight, she really helped make it possible for disability to not be a bad thing, to make it OK to be disabled in the world and not be regarded as a person who needs to be in a separate, special place," Town said."

I think that is an excellent point about making it "OK to be disabled in the world" rather than being "regarded as a person who needs to be in a separate, special place".

If you're not present in the time and place and space where rights have to be fought for it can be easy to overlook the reasons in that time and space that publicizing, protesting and innovating were indeed a way, maybe the only way, to achieve the laudable goals.


This excerpt from the article mentions some of the struggles to attain the basics and her educational achievements. Again, it may not seem like a big deal now that a student in a wheelchair is graduating in 2023 but back in Judy's day it was indeed so.


"Her book recounts the struggle her parents experienced while trying to secure a place for their daughter in school. "Kids with disabilities were considered a hardship, economically and socially," she wrote."


"She went on to graduate from high school and earn a bachelor's degree from Long Island University and a master's degree in public health from the University of California, Berkeley. It was groundbreaking at the time, which shows just how much has changed, Wall noted."

"Today the expectation for children with disabilities is that we will be included in mainstream education, that we will have a chance to go to high school, to go to college and to get those degrees," Town said while acknowledging that inequities persist. "But I think the fact that the primary assumption has changed is a really big deal, and I also think Judy played a significant role."



So in one woman's lifetime, mainstream education went from being a struggle or an impossibility to becoming an expectation. And she was a big part of that, being a role model and also through her work in government on these issues.


Barack Obama paid tribute in this tweet:

"Judy Heumann dedicated her life to the fight for civil rights—starting as a young organizer at Camp Jened and later helping lead the disability rights movement. Michelle and I were fortunate to work with Judy over the years, and are thinking of her family and friends."


This CBC article is a good outline of some of Ms. Heumann's foremost achievements which are numerous and amazing. The sequelae of her bout with childhood polio presented many challenges, no doubt, but she was able to turn them into achievements that she likely otherwise would not have done. It certainly gave her a voice to do so much to help others and to change society in this regard.

As an aside, of course I had to wonder why she contracted polio and so I did the math. I'm assuming she just missed out on getting the polio vaccine as she would have been about 7 or 8 when it arrived in Canada in 1955 and it was given to children from infancy to age 6.

You see, as blindguy brings up, I was just about to say that was a tragedy. It seems so just automatically - that for the sake of a year or two children continued to contract polio and then had to live with often severe lifelong adverse effects of it. And then people wanted to tuck them away from society? Or at least thought they could not achieve much of anything.

But from tragedy arises the opportunity to bring change, much needed change, that benefits many.

That is a legacy.



Edited 1 time(s). Last edit at 03/07/2023 09:11PM by Nightingale.

You see, as blindguy brings up, I was just about to say that was a tragedy. It seems so just automatically - that for the sake of a year or two children continued to contract polio and then had to live with often severe lifelong adverse effects of it. And then people wanted to tuck them away from society? Or at least thought they could not achieve much of anything.

But from tragedy arises the opportunity to bring change, much needed change, that benefits many.

COMMENT: Thanks for your contribution to the discussion.

A disability like polio "automatically" seems like a tragedy because it is. It affects those who have it in a profoundly negative way--even if some, like Ms. Heumann manage to rise above it and accomplish great things.

We should not let our inspirational stories--like Ms. Heumann's story-- allow us to minimize or lose sight of the tragic nature of the disease. Minimizing the tragic nature of the disease undermines empathy and fails to motivate the political will to provide accommodations.

In short, we do not want to encourage the attitude that polio is O.K. after all; just look at all the people who have managed to live productive lives in spite of it, and all the wonderful inspirational stories it has provided.

Henry Bemis Wrote:
-------------------------------------------------------
> In short, we do not want to encourage the attitude
> that polio is O.K. after all; just look at all the
> people who have managed to live productive lives
> in spite of it, and all the wonderful
> inspirational stories it has provided.

Yes, I'm getting your point. I really appreciate the discussion you and blindguy are having - or maybe I should call it a dissection - because you're both getting deep into specific details about the issues.

It's easy to make generalizations but often they're not accurate nor informative. When we look at a specific issue or more details about it perhaps our understanding and opinions change.

For instance, it's almost a knee jerk reflex to say yes of course polio is tragic. But would Ms. Heumann want us to think that about her and her life? Is it an insult or rather an acknowledgement of a person's circumstances? And tragedy or no, would she have accomplished what she did had she not had polio? Would she have been drawn to the same issues that with her attention brought needed change to the benefit of many?

I have often thought that it's a good thing I was born with all my senses and abilities intact because I wouldn't have thrived otherwise. But what might I have accomplished if I'd been in the position of personally needing societal change? Very likely more than I have done.

I have advocated for people in need for various reasons (poverty, refugee situations) but without changing the world.

My sister has mobility issues and needs a wheelchair to get around. She accomplishes more in one day than I get done in a month, with a greater positive effect on society. I have wondered how I would have reacted if I were the one in the chair and what I would be able to accomplish. I'm not sure of the answer.

There is no doubt that a person's circumstances often, and understandably, influence their interests and pursuits and the course of their life. My sister was involved with disability issues before she ended up needing a wheelchair herself. She is even more fierce now in her advocacy.

She gets so frustrated about lack of access, for instance. She lives in a community whose political leaders are proud of the prominence they place on having an accessible city yet in bad weather she has great difficulty navigating the steep hill outside her home, whether she's trying to travel up it to get home or down it to get to work. In heavy rain the water builds up and soaks her as she splashes over broken curbs. In snow the plows push dirty snow into huge piles right up against sidewalks and curbs and her chair can't get over, through or around them, necessitating detours and/or risky forays into street traffic trying to bypass the huge mounds. Several times a passing fire crew has jumped off their truck to rescue her from the ignominy and frustration of being completely stuck, turning into a snow statue in a heavy storm. (She puts those serendipitous encounters on the plus side of her ledger because who doesn't swoon over husky firefighters rushing to offer assistance).

I often wish my sister wasn't in the chair. I don't know how she feels about it - she never complains and we haven't even talked about it now that I think about it. She certainly gets extremely frustrated at times and sometimes even afraid in certain situations, mostly around access, like when she's alone in the dark somewhere and can't get transportation or when the accessible washroom isn't available (or there isn't one) and nobody seems in a rush to fix it.

It's not always fun to go shopping with her either because she gets quite up in arms about lack of access in big shops where management should know better than to block off entries and exits in a way that completely prevents access or egress for people in scooters and wheelchairs. (Here's looking at you Walmart). I get up in their face about potential emergency exit requirements. Nothing changes. So far.

The reasons why certain obvious needs aren't met include the obliviousness of many non-disabled people who just don't think about these issues. I am more patient about it being more about obliviousness rather than any deliberate failures but my sis not so much.

She may have become involved in these issues anyway, knowing her and also the types of work she has done and is doing, but certainly being in a chair now herself has ramped up the nature and urgency of her advocacy. There is a real chance that her experiences, needs and vocal approach to solving the issues will effect change for all.

So, tragedy? Yes? No?

It's a loaded word. One I would never use to describe her situation, definitely not to her face because - just because.

But I can see in general how in some ways it is - of course it would be wonderful if everyone always had the use of all the senses. Meanwhile, all we can do is to avoid making the mistake of discounting, ignoring, underappreciating and otherizing people who are differently abled.

And quit blocking the road so they can get through! They have places to go and people to see and great things to accomplish.



Edited 1 time(s). Last edit at 03/08/2023 04:44PM by Nightingale.