Autism

I'd like to thing that the UK's National Autistic Society is a model of inclusiveness and respect http://www.autism.org.uk

Autism Speaks plays heavily on pity. Their headline figures for the rates of autism always include high-functioning autistics (around 80% of the total) but their publicity focus is on low-functioning individuals.

Actually the reality of people with disabilities knowing and being willing to acknowlege that they deserve the same dignity and respect as other people has been supressed by the media and therefore mainstream culture. This truth however, has never been absent from the honest and natural expressions of all humans which includes disabled people and other oppressed minorities. People continue to find creative ways to ignore that reality but that doesn't make it any less real.

The autistic advocates have leaened how we may be allowed some leadway in this asserting or rights to dignity directly from more recognised disability advocates who have encountered the same oppression by the same oppressors.

Some advocates will refrain from attepting to alter mainsream attitudes by asking the public who are seen by them as our only resources and shielding that public from what the public would see as our arogence that we should be ashamed of. Such expectations from this public often go beyond requests for sympathy and lead to demanding that we experience humiliation.

The other alternative to pity ins't an eaqually disprespetful treatment. When people learn to respect humans just because they are humans, they will have no problem with showing that same respect to all humans which now includes those who are described as disabled or in some other way inferior.

I'll sign the petition.

@Robert Adams, yes, agreed.  I was thinking about the things you write as I was putting together this post last night, and wondering how much I should brace myself for a (possibly very negative) reaction.  Bringing the perspective of disability rights groups more into the public consciousness is something I hope to do in this space.  Not that this space is mainstream media, but it may attract readers who aren't as deeply involved in the disability community as we are, but who may share some of the same values for human rights.  That is my hope anyway :-)

I'll sign. And Dora, I just wanted to let you know how much I'm enjoying your posts. They're passionate yet thoughtful and balanced and always informative.

@Socrates The New Republic, I'm a big fan of the NAS.  I actually have a story on it sitting in my drafts box to post out in the future and hope to feature NAS here from time to time.  I think NAS has done an exceptional job at both addressing real issues and being respectful and inclusive at the same time.

@Ed none, thank you for your intelligent, provocative comment.  You've gotten me thinking about this issue in some new ways (I'm still processing the new things you have gotten me thinking about, not quite ready to write about them yet), and that makes me very happy!  Thanks again, your comment was very appreciated by me.

Good to see someone else blogging the petition campaign!

Did you know that there is also a Facebook group dedicated to the campaign?  at <a href="http://www.facebook.com/group.php?gid=4053839">http://www.facebook.com/group.php?gid=4053839</a>

I've also blogged about the petition, with a discussion of the difference between "pity" and "empathy"; why Jerry's brand of pity is destructive, and why real empathy is more likely to lead to human rights:

<a href="http://reunifygally.wordpress.com/2009/01/10/protest-pity/">http://reunifygally.wordpress.com/2009/01/10/protest-pity/</a>

@Andrea Shettle, thank you so much for posting these links. I just joined the Facebook group.  Your <a href="http://reunifygally.wordpress.com/2009/01/10/protest-pity/">blog post</a> is fantastic, I hope (and encourage!) people reading this comment thread to click read it.

"Bringing the perspective of disability rights groups more into the public consciousness is something I hope to do in this space."
It might be helpful to those who will have a reactionary response to your column to explain that the autistic rights movement is part of the broader disability rights movement.  That will give them some basis of understanding if they are aware of other disability groups.

I'd like to see you write a column about the divide between mental health advocates and disability advocates, namely that some disability rights organizations haven't always embraced us or our issues. In some ways, we have to fight against mainstream disability rights "activists" in addition to the mainstream.  There is a huge divide between those born with a disability and those whom become disabled later in life.  But, perhaps this may be too much at one time.  I just "plant" the thought in your head for a post much later down the road.

I signed it, and read every comment made.  Some nice people there.  Almost 500 signatures now.

@Robert Adams, I really like some of your column ideas and have copied them into my "ideas" file where I store future column topics.  I've been thinking a lot lately in particular about the divide between those are born with disabilities vs. those who acquire a disability later in life, vs. those who only imagine having a disability but don't have one, and how that may impact our perspectives.  That's a topic that interests me a lot.  I need more time for reseach! :-)

The first lecture on disability studies I heard was by Paul Longmore; it was a critique of "Jerry's Kids." I've cringed every year hearing about the telethon and was really glad to read about this petition.

I think the core issue is how we think and care for the disabled citizens of our country - no matter the nature of the disability.

Currently, those who are disabled must wait years before receiving aid they desparately need. Is this the way we should care for the disabled. 

Sure I believe the disabled should not be disenfranchised simply because they don't have a voice. They must depend on the ABLE to bring to the fore their issues of medical and social needs. And, like the preditors some of them are, they take advantage of the most helpless among us.

Also, I believe shame on those that would denagrate anyone because of some physical or mental disability. Words like idiot and retard are just as injurious, negative, and incitful as a racail slur.

I believe we all have a responsibility to aid and protect the disabled whenever and however we can. We have come a long, long way in the past thirty years. Let's reward those that made that progress possible.

Thanks for your time and effort on behalf of the disabled.

@Dora, thanks for bringing this to our attention.
I've signed the petition.
This is *so* much our issue as auties (and allies) as well as it is the crips' (and their allies).
The biggest, best-funded, and most media-exposed autism organizations work the same way as the MDA, when it comes to marketing message: pity.  Shock-and-awe.  (I kid you not, that was the internal term for the ASA's ugly "Getting the Word Out" campaign of a couple of years ago.)  "Ransom Notes".  "Odds of your child being born autistic:..."  Need I say more?
It totally undermines self-advocacy and self-determination.
This has to stop.

Frankly, I find nearly ALL of the media coverage autistics get offensive. The focus consistently seems to be how afflicted the parents are by having kids who aren't normal, and how awful it is to have an autistic child, and how saintly the parents are for nurturing them. Grrr. I won't even start my rant on how incredibly rude Autism Speaks is. It would really be nice to see some *positive* coverage of people on the autism spectrum, and to view us as people rather than a disease that needs to be eradicated and wiped out. 

@Dora   I was the Disability Awareness Coordinator for the Muscular Dystrophy Association in Denver, CO in 2007.  I can personally attest to the fact that there has been a dramatic change in attitude at the MDA since Jerry's deplorable statements in Parade in 1990- otherwise they never would have let a firecracker like me in the door!  I would have been protesting right along with Jerry's Orphans back then.  No one I encountered while I worked there had pity on there minds.  We fought day in and day out to direct the public towards the positive aspects of what those with Muscular Dystrophy can accomplish at a camp or benefit from at a clinic.

We fought your fight each day.  Pity was the kneejerk reaction from the public and emails when soliciting funds.  We had to rewire that reaction so that they believe in the future for those with Muscular Dystrophy and see the possibilities.

Jerry Lewis is one man.  The majority of the money "raised" at the telethon is raised year round in other pledge or volunteer programs, such as the firefighter's Fill the Boot program, and then delivered during the telethon.  These programs are run by everyday hard working npo coordinators and fueled by motivated volunteers because they believe in lives of those they are raising funds for.

Kendra,

Jerry Lewis may be "one man," but it is his face and his message that represents MDA to the vast majority of the public.  You really can't get away from that.

While there have been some changes to the good in the telethon since the early 1990s (there was no dramatic improvement after the Parade article), Lewis is still capable of doing some really vile stuff in the name of "advocacy" on the 'thon.

Here's an excerpt from Diane Coleman's post last year on the NDY blog during the "blog against the 'thon:

"But during the 2001 Telethon, Lewis crossed a line in a way that continues to shock and anger me. He told the story of a 15-year-old with muscular dystrophy who was on a vent. Lewis was contacted because the young man said he wanted to go off the vent and die. Lewis reported to the Telethon audience that when he telephoned this young man, he apologized to Lewis for not beating the “disease." He'd told his parents that he was sorry for having brought them down and being a burden. He took himself off the vent (which could not have been done without the permission of his parents). This, said Lewis, is why we have to beat this disease. Lewis said not a word about assuring him that he was not a burden, or arguing that this was a bad reason to decide to die, or suggesting that he wait-and-see, not even to wait for the cure the Telethon has been promising all these years.

"Lewis gave no sign that he fought for the life of this 15-year-old young man during that phone call. By the time of the 2001 Telethon, he had already died. The worst part of Lewis’ account is that he was then speaking to all the other young people watching the Telethon – from nondisabled fundraising scout troops to teens with neuromuscular disabilities on ventilators. And what they heard was that Lewis did not express one word of disagreement that this young man was a burden to his parents, nor did Lewis disagree with his decision to die for their sake."

***End excerpt***

On a related note, maybe it's not so strange that Lewis told this story.  The local MDA (and I think this reflects a national policy) will cover costs or insurance gaps for wheelchairs, braces and similar orthopedic equipment.  There is no assistance available for ventilator equipment or bipaps (the latter often used by older folks with SMA).

The message seems to be: If you want to get around, MDA is there to help; if you want to breathe, you're on your own.

@Kendra Kellogg, I really appreciate your writing in here and giving your comment.  I think what you said, "Jerry Lewis is one man" is important to remember--the protest is against giving Jerry Lewis the humanitarian award, not against MDA.  You also said, "Pity was the kneejerk reaction from the public and emails when soliciting funds," which I think is a really important (perhaps even the most important) point.  If we could change popular culture to view people with disabilities in a more positive way, they wouldn't react with pity.  I do believe change needs to come both from within mainstream culture as well as from the spokespersons for charities.  It's a very complex situation with many factors feeding into it.  Thanks again for bringing up some of these important points.

@Dora @Stephen  The psychology of pity is a topic that is often on my mind because I run into it so often it the public and to be blunt, hate it. My question is often why this exists, what is the psychology here?  And even more importantly, why did it ever work to raise funds at all- would it not stop proactive thinking.  The MDA never uses it currently on a local level in Colorado because, like me, the staff is on the front lines to advocate for who they believe in.  But, yes it is ingrained in the overall view of the MDA's, and other nonprofits, reputations.
 
There are so many alternatives that are highly effective in raising funds.  My tactic was belief in abilities, connection and (sometimes obnoxious) enthusiasm for everyone's involment- it works better. I always surpassed financial goals. Hopefully this will one day be an overall trend. 

My big question here is that no nonprofit would ever have used a pity as a tactic in their history if it was not generating plenty funds- why did this ever work to begin with? 

@Kendra Kellogg, You ask a fantastic question here, in fact such a fantastic question I want to go off and do an entire thesis on it!  It may take me a while to get around to posting my findings back here, but something that's currently in my "ideas" file to research more and address is in fact the history of pity in fundraising, and get a better handle on what has improved (or not) over time and some ideas about why.  If you have any resources you feel would be useful for me to read on this topic, please let me know about them.  Thanks again--I really believe that asking questions like the one you pose are key to understanding the current situation well enough to actually improve it.

@Dora  There are far more effective ways to fundraise, and any type of history and analysis will forward change!  What needs to get out there more are the numbers in order to kick the rut.  Positive techniques generate funds, period.  It creates connections/relationships as opposed to pity dollars.  People like to connect and relate.  I was partially trained to use a positive route, and then personally increased that tool at the MDA itself and onwards.

It works the same for campaigns for community support and legislation that provides services as well.  I do not know how you feel about those topics. I have access to numbers and reports on that issue.

@Dora Easter Seals admitting, tackling (to a degree) the subject.  This is company history, not fundraising- an interesting  read:  http://www.allbusiness.com/specialty-businesses/non-profit-businesses/464825-1.html 

@Kendra Kellogg

... The most common argument that people tend to give for not wanting to sign the petition, or even denigrating the entire movement protesting Jerry and his annual telethon is, "But pity generates dollars! That's just how you raise money for charity! People who complain about this are therefore just "biting the hand that feeds them."  (See for example, the discussion thread at http://community.livejournal.com/deaf/823808.html?view=8271104#t8271104 ... and in a different slant, the comments from "Ron" left at  http://reunifygally.wordpress.com/2009/01/11/people-with-muscular-dystrophy-protesting-pity/)

It would be so great, and potentially helpful, if there were a blog post dissecting this argument, why it is wrong, why there is a better way that Jerry COULD have and SHOULD have taken, etc., that could still have raised money for MDA but without all the destructive pity baggage.

If you consider writing it, please let me know so I can link to you!  I've been maintaining a running list of blog posts at http://reunifygally.wordpress.com/bloggers-protesting-pity/

@Kendra Kellog, thanks for the link to the Easter Seals history; I am gobbling it up.  I sent you a private message re. your other comment.

@Andrea Shettle, you wrote "It would be so great, and potentially helpful, if there were a blog post dissecting this argument, why it is wrong, why there is a better way that Jerry COULD have and SHOULD have taken, etc., that could still have raised money for MDA but without all the destructive pity baggage."  I am very much planning to do this--it might take me a while because there's a lot of research to do, but I definitely am working on it!  Also, I loved you comments in the ReunifyGally post.  Also--thanks for the list of other blog posts, very cool! (and thanks for adding me to that list :-)  Regarding the argument, perhaps my social simplicity is being triggered here, but it sounds to me like a simple "the ends justify the means" argument.  If we could help charity by murdering 40 people, would that be OK?  Where is the line drawn between the ends and the means, ethically?  Am I missing something?

@Dora:

Will look forward to your blog post on more effective, non-pity-based means of fund raising, if you are able to write that!

Re, the "end justifying the means" argument ... I suspect it is more complex than that.  I think many non-disabled people just cannot see why some of us raise such a fuss about "pity."  They honestly don't see how destructive it is ... maybe in part because they have it mixed up with more positive attitudes such as empathy (which is why I wrote that blog post explaining why pity is so very different from empathy) but also because they fail to see the connections between pitying attitudes and the more pragmatic consequences we experience because of them.  I think that many non-disabled people think that we object to pity because it hurts our feelings.  I think the disability community as a whole has not really been effective at getting this message through to non-disabled people.  (Of course, having Jerry bleating at the public, drowning us out each and every year, does not exactly help.  But we may not have done enough to help ourselves, because the connections seem so obvious to US that it can sometimes be hard to remember--and I VERY much include myself in this--that these connections are not as glaringly obvious to others.)

And if you try to argue that pity forms the basis of harmful ACTIONS, such as job discrimination or even hate crimes (that counteract whatever good might be done by Jerry's telethon), they just can't see the connection.  It's far too nebulous for them.  It's messy, complicated, and very very subtle.  People seem to have the same kind of difficulties understanding the connection between racist or sexist stereotypes and more pragmatic experiences such as black men never being able to wave down a Taxi cab (if they even believe that kind of thing actually happens etc.)  There are too many intermediate things that happen along the way to shaping the attitudes of the public ... and then even more intermediate things that happen along the way from those attitudes to the pragmatic consequences that impact the lives of real people.  Some people just have a lot of trouble believing that these kinds of nebulous-seeming connections even exist -- even in cases when you CAN actually provide documented evidence of these connections.  (They simply find ways to dismiss all the research.)  And it's even harder if the connections haven't actually been researched and documented in clear ways.

So I think part of the problem is this:

Jerry's telethon --> Pity --> Mucho Dinero $$$$ for charity --> More money for medical research and equipment yada yada --> pragmatic positive results for people with disabilities

Pity = people's feelings are hurt, boo hoo, what are they, three year old kids crying because the big kids wouldn't let them on the slide?
Medical research = people's lives are saved, a no-brainer comparison

Meanwhile, what we in the disability community are trying to present is this:

Jerry's telethon --> Pity --> Perceptions of people with disabilities as being perpetual children ... as perpetually helpless ... as perpetually dependent ... as passive recipients of charity --> perceptions of people with disabilities as unable to be adults ... as unable to help others as much as we are helped in turn ... unable to be productive, active people --> perceptions of people with disabilities as undesireable employees --> the assumption that giving a job to a person with disabilities automatically equates to charity (if you assume they have nothing to contribute to the office, then what else would it be?), which triggers the indignant response, "I'm trying to run a business, not a charity!" --> employer refuses to hire or even interview job applicants with disabilities

(I'm focusing on employment issues primarily for simplicity's sake, and because I suspecdct it's something that affects most adults with disabilities who have the capability to participate in the workforce ... but you could make similar threads for things like hate crimes, aborting babies with Down's Syndrome, etc.)

The first thread (Jerry's telethon --> SAVES LIVES!) is ever so much easier to understand and intuitively believe than our much messier, longer thread.  With our thread, you have to get people to understand WHY perceiving people with disabilities as childlike, helpless etc is a bad thing (hard to do if some of the people you are talking to might in fact instinctively BELIEVE these ideas themselves ... "Well, aren't they fairly dependent in at least some ways? isn't it just stating facts to say that PWDs can't ever REALLY be independent?") ... then you have to get them to believe that Jerry's telethon helps perpetuate these perceptions  ("Oh, but it's not CREATING the perceptions, at most it's just reflecting and USING the perceptions that are already there!") ... and then get them to grasp the idea that these perceptions lead to the next steps in the thread outlined above ...

Sorry to ramble on at such length -- I know I must have repeated myself a few times!  Not sure how clearly I was articulating myself!  I'm also not sure how to address all of these barriers that block so many people from understanding why so many people with disabilities abhor Jerry's telethon.  But I think it can be worthwhile doing this kind of analysis because we cannot counter this kind of thinking (and thus win over more non-disabled supporters) without understanding these kinds of dynamics.

I believe that Jerry Lewis did help many people with disabilities, but in an era where funding and awareness of suffering were the main poings.  We are moving into a wonderful new paradigm, of empowerment and not pity, but I don't think that Lewis should be judged so harshly for what he has done.

Also, I need to ask, what kind of life did people with Muscular Dystrophy have *prior* to Jerry Lewis' work?  His telethon had a place in the history of awareness-raising, and that should be honored.  Let's not be blinded by our 20-20 hindsight.

Maybe you could also contact the presenters of the Ouch Podcast - a monthly BBC programme to spread the word further.
BEst wishes

Susan Senator: The fact that Jerry comes from an older era could be accepted as an excuse IF he had demonstrated a willingness to LISTEN TO and WORK WITH people with disabilities as equal partners, and to LEARN FROM people with disabilities.  But he has persistantly refused to do this. 

People with muscular dystrophy are themselves frequently among the most outspoken leaders of the protests against Jerry's annual telethon each year, and are again at the forefront of protests against his award.  Some question whether the telethon has really helped as much as they claim.  Others question the underlying goals and assumptions of the telethon (eg, although some people with MD do want a cure, others see this as a low priority compared to other issues such as human rights that would impact their lives much more).  And others feel that the harm done by the entrenchment of pitying attitudes and negative stereotypes through Jerry's telethon has outweighed the good done by the money raised.

You can read what people with muscular dystrophy themselves say about the protests by following the links here:

http://reunifygally.wordpress.com/2009/01/11/people-with-muscular-dystrophy-protesting-pity/

I think the fact that so many people with muscular dystrophy themselves invest so much energy into objecting to the way they are portrayed via the telethon says something about how much they feel their lives have been "helped" by the telethon in comparison to how much their lives have been HARMED by it.  On one hand, yes, SOME people with MD feel there has been SOME benefit to them (though others don't agree with this).  BUT, the key point here is, even some of those who feel there has been SOME benefit to them ALSO feel that Jerry's approach to fund raising has caused them so much harm that they outweigh the benefits.

To understand more about why people with disabilities feel that Jerry's "pity" approach is harmful, you might want to try my blog post explaining the difference between "pity" and "empathy" and why empathy can potentially lead to human rights but pity does not: http://reunifygally.wordpress.com/2009/01/10/protest-pity/

This is a rather dogmatic and oppinionated cause.  One article and Jerry Lewis has become the worst human on the planet.  Such enjoyment with the destruction of another popular figure.

The mass view of this situation is one I would favor versus this single minded and heavy handed attack article.  This is not a debate but simply another group who enjoys character attacks and tearing down popular beliefs and causes. Like the annoying kid in college who always knows a new band before you do.  This was very popular after 9/11, when AM radio was full of rants as people hijacked NYC tragedy to make themselves more important.

Jerry did much more for children than the writer and the head of this cause. Jerry's mistake was that his way of doing, feeling, or being does not meet what appear to be predjudice standards on the way to devote ones life to a cause.  Jerry raised more money and more awareness and had a greater impact than anyone.  His understanding, motivation, and dedication are what made Jerry, Jerry.  You cannot state that he genuinly cared and did what he thought was right.  This cause and single article that launched it are frightening - to judge people so critically and fault them as if they are inferior.  His life, his legacy, all that he was warts in all, is the whole of a human being.  What is contained in your cause is a one dimensional understanding and little empathy or compassion to a fellow human who did more than you will do in ten generations.

@Susan Senator, I think the point you bring up is important--it gets into the same sort of question like, "many of the founding fathers of the U.S. kept slaves--should they be condemned for it?"  On one hand, I appreciate that it is unfair for people who grow up with an older set of cultural norms to be judged via a more modern lens.  On the other hand, it becomes less easy for me to forgive when that person *also* exists in a modern context and had been given many opportunities for change (contrast founding fathers who never had an opportunity to be exposed to an anti-slavery point of view).  It must be horrifically difficult for a person to admit they are wrong about something after spending decades making very public statements about it--what a lot of courage that must take!  Should Lewis have modernized his approach at some point?  Should he (or even could he) have apologized?  I don't really have firm opinions for myself on these points at this time, to be honest.  This is why even though I've brought this issue up because it's important to many in the community, I haven't actually signed the petition yet.  It's an extremely complex situation.

Thanks, Dora, I do think that changing with the times might have helped the cause of empowerment over pity. However, this is complex, as you say, and even the founding fathers were exposed to anti-slavery views (the Declaration almost did not get ratified because of the original anti-slavery language that Jefferson had put in. Jefferson was conflicted on the point.)  I still maintain that Lewis has done a lot for this cause and that it feels to me very harsh to put all of this new thinking and need to change on him.  It also draws attention away from all the good the organization and the awareness has done.  I feel the same way about Autism Speaks.  I don't agree with everything they believe or say, but I do think that raising funds and public awareness is a big step in the right direction.  Others have to continue to push back on the other (negative) messages that come with what AS says and does, likewise it is good to have this conversation because it raises awareness of how much more Lewis could have done, had he listened.  Still, I think we should let him be.

@Susan Senator, you said, "it raises awareness of how much more Lewis could have done, had he listened"--Side bar to that, while these discussions often end up harsh all around, I do think it's important to have them if only as a way to learn from past mistakes and prevent history from repeating itself.  What is done poorly is IMO just as important to examine as what is done well--and by "what is done poorly" I don't just mean Lewis' attitude but also what strategies are better and worse for working to change such attitudes.  Again, I haven't really come to any real conclusions for myself yet, but there's a lot of interesting stuff to examine in here...

@Susan,  first, on a nerdy note, (being in the midst of a nearly year-long obsession with early American history) - Jefferson didn't remain conflicted for long, but came down very strongly on the side of the perpetuation of slavery.  He also engaged in Michael Jackson-type buying habits that made freeing more than a few slaves after his death impossible - he was too deeply in debt due to his economic irresponsibility and the slaves were *assets* that were sold off at auction.  A measure of the awareness of the founding fathers about the contradiction between the ideals of the Republic and the reality of slavery was the careful planning that George Washington engaged in so that his slaves would be freed after his death.  According to one of his biographers, one of Washington's motivations for seeing that his slaves were freed was his concern over history's judgment of him.

As to Lewis - these criticisms haven't been directed at him all of a sudden.  There have been highly-publicized crticisms since at least 1990.  I would think that 20 years would be enough time for someone to make some adjustment to a changed world.

But Lewis isn't built that way.  And it's not just about disability.  A couple of years ago, I watched a documentary about him.  A common theme in his life is an absolute refusal to say he is sorry or wrong about *anything*.

I've only been involved in telethon-related protests for about a decade.  I doubt that people who have been at it for that long are inclined to "let him be" - and they shouldn't be.

@Susan
if we were being asked to endorse a campaign to pillory Lewis what you say would have some resonance. But this award is the equivalent of placing Lewis on a pedestal and giving a very public endorsement to his views on disability.

I could maybe see placing Lewis on a pedestal - after dipping him in bronze, like my old baby shoes!  Ah, just kidding. :-)