Friday, March 06, 2009

A Blog in 5 Acts

Act One:

A few days ago Andrea, a regular fat reader and commentor, brought to my attention a protest on facebook against the use of the word 'retard'. Facebook has a policy against hate speech for all but disabilities it seems. This protest was to get Facebook to consider hate as hate and people with disabilities as equals. I am not a Facebook person but I brought it to my boss Manuela Dalla Nora. It shocked me to learn that Manuela had a Facebook account (thought it is a bit ... um ... dusty). We agreed that Vita has a lot of young staff and that many of them would have a face book account. Shortly thereafter Manuela sent this out to all Vita staff.

Act Two:

FaceBook, Bigotry and Fighting Back

It may surprise all of you to know that I have a facebook account, I know that some of you see any of us who are over 40 (or 50) as dinosaurs when it comes to technology. (Okay, I’ll admit there is almost nothing on my site and I rarely use it – logged on only to see what my son was up to!). However, I have recently become aware of the sheer volume of facebook pages that exist for the sole purpose of mocking and ridiculing people with intellectual disabilities. You will remember a few weeks ago we sent you some cards to use when you heard people use words like ‘Retard’ or expressions like ‘That’s so Retarded!’. We don’t set little goals here at Vita, we set great big ones. We want to end the use of this kind of language. We want to make people realize that their words have the power to hurt.

Facebook has a policy of banning hate speech. The problem is they don’t classify the word ‘Retard’ in the same way as they do other words that put down other people. We want to change that. There is a way to protest … if you, too, would like to have facebook respect people with disabilities join the protest at …

http://www.facebook.com/group.php?gid=63516216741 or by simply pressing here

Here’s what they say …

Currently there are over 1000 groups on Facebook whose goal is to mock and demean people with special needs. These groups include names like RETARD HATERZ, RETARDED CLUB, I'M RETARDED, TEAM RETARD and RETARD NATION. These groups post pictures of children with Down Syndrome and Intellectual Disabilities for a laugh.

Facebook's terms of service clearly go against what they are allowing on their site "groups that attack a specific person or group of people (e.g. racist, sexist, or other hate groups) will not be tolerated. Creating such a group will result in the immediate termination of your Facebook account."

Let's see if Facebook is really willing to live up to their terms of service and stop mocking children and adults who have special needs.

Slurs and stereotypes hurt any way you look at it.

Please help us stop these hateful groups on Facebook by joining our group.

We have a mission! Help us spread the word and invite your friends to join our group.

I believe that we have collective power here at Vita and I encourage those of you who are facebook members to join. We’d like a record of Vita’s involvement, so if you choose to join in on the protest just send an email to dhingsburger@vitacls.org and say, ‘I’m in’.

Act Three:

On the same day Manuela sent out an email to ED's of similar organizations in Toronto, informing them of the protest, of Vita's participation by asking staff support and encouraging them to send out information to all their staff as well.

Act Four:

Within 2 minutes of Manuela's email to Vita staff, I began receiving 'I'm in' notes from staff around the agency. They are still coming in now.

Act Now:

If you join in as a result of Manuela's note on this blog please comment here on the blog or email me at my work address simply stating 'I'm in' and where you are from. We'd like to see what power networking has ...

108 comments:

Jenn McWhorter said...

Don't know your email address, but I'm in.

Jenn McWhorter said...

At least, I'm in as soon as FB is back up.. it's down for maintenance at the moment.

Anonymous said...

I'm in and have asked other fb contacts to join.

Annie

BenefitScroungingScum said...

I'm in too. Hope both you and Joe are ok Dave, BG x

goddess-amy said...

I joined when I saw the comment on your blog. I sent out invitations to join to my friends too and I just checked back and three of them have joined too!

Carrie said...

I'm in! I will also add the link to join the group to my "status" bar so that all of my friends and family on facebook will be reached as well.

Carrie, from Brantford

Pat said...

I'm over 50 so I'll have to figure out how to join-then I'll be in!

Stephen said...

i'm in and delighted to see that over 7000 others are already.

Tamara said...

One of the first groups I joined when I signed up for facebook. Unfortunately, among those 7000 odd members, there are some who don't get it at all ... and what about the other words like "moron" and "idiot" and "downie" ... ugh.

It's all hate speech.

Sharon said...

I've joined, but I don't much like the name of the group. Surely there's better terms than "people with special needs"? What is wrong with "people with disabilities"?

Dave Seidel said...

I'm in. I found out thought the membership of the Autism Hub (http://autism-hub.co.uk), for which I'm the admin.

jypsy said...

I'm the one who told the Autism-Hub (and others....) My son Alex is in.

Sharon said...

I won't ask other people to join until they sort out the group itself. When asked politely and gently why "special needs" was used in the title, saying it's a term usually used by people outside the disability community, one member was rude and condescending saying the deaf woman who asked the question was stuck in the past.

Not good.

jypsy said...

Sharon,
I just read that thread and I too was greatly disturbed by it.

Dave, I'd be interested in your thoughts....

Anonymous said...

I'M IN!!

Lesley
Lindsay, Ontario

Tumshie said...

I'm in!
tumshie from scotland, uk!

I've emailed you too Dave!

Leslie said...

I'm in and posted about it on my FB page.

Anonymous said...

I'm IN, and sending to my contacts, Norfolk, VA

Anonymous said...

I'm in and invited my facebook friends to join also. I lurk here most days but have never commented before.

Mom2haley said...

I'm in too.

Annie said...

I'm in! Ann in Baltimore, MD.

One Sick Mother said...

I joinewd when I first saw Andrea';s note here on CTF. I invited a bunch of people to join (and they did).

Unfortunately on Facebook; "groups" don't track invitations the same was as "causes" do, so I can't see if the people I invited then invited other people. I am confident many of them did.

ultratired said...

I;m in...community living welland /pelham.

Clay said...

I'm with you. But I'm not joining Facebook.

Allison's Mom said...

I'm in, and invited all of my friends to join. I had no idea those groups were allowed on FB. Thank you for bringing it to attention.

Bek said...

I joined. And send it to all my friends.

Liz said...

I'm in.

Janice said...

You are so lucky to work for an agency that actually gives a shit about something other than money and meetings. I can't imagine her doing something like this. Where is Vita located anyways?

Eileen said...

I'm in!

Trenna said...

I'm in. Invited all of my DSW classmates too. Chatham ON

meagan griffith said...

I joined! I also invited all of my facebook friends to join. Thank you for this! I had no idea this was allowed on FB and I am appalled.

Molly C said...

I'm in.

My Opposite Boys said...

I didn't get past the part that says 40-50 is dinosaur. I have to tell you that my 85 year old grandmother just got a Facebook account!! She rocks!

Anne said...

I'm in. And I posted this message on the facebook group's page:

"I'm here because I read a post on Dave Hingsburger's blog, Chewing the Fat. My oldest son has Down syndrome and every, single time I hear the word "retard" or "retarded" used in a derogatory manner I'm immediately transported back in time to the day I learned by way of prenatal screening that Archie had Down syndrome. It's a reminder of my ignorance, of those first few days of confusion and sadness. And it reminds me that you, the people who continue to use these labels in a hateful way, still see my son like I did during those early days before I could ever comprehend what an amazing and engaged child he would someday be."

Ashley's Mom said...

I'm in!
Deborah
Richmond, Virginia

Andrea Shettle, MSW said...

Dave (and others):

The thread that Sharon and jypsy are talking about is this one: Accept people with ALL SPECIAL NEEDS ... and the "deaf woman" in question is me.

Personally, I'm remaining in that group because in order to make change, sometimes uncomfortable alliances are necessary. And, there ARE sometimes legitimate differences of opinion on what language is most appropriate or "politically correct." For example, in the US, the strongly preferred term is "people with disabilities" and "disabled" is considered offensive. In the UK, it's the other way around.

People on both sides of the Atlantic tend to be surprised and shocked the first time they learn about the opposing preferences and wonder if everyone from the other country is backwards or discriminatory toward disabled people or people with disabilities! But if you understand the internal history of the disability rights movements in both countries, and the rationale behind the language choices, then both (at least to me) actually make a lot of sense within their particular cultural context.

In the US, "PWD" is preferred because of the history of "people first" language. In the UK, "disabled" is preferred because, for them, "disabled" is not actually a reference to anything wrong with the person at all, it is actually a very politically outspoken term that emphasizes the role of the ENVIRONMENT in creating most of the barriers that disabled people experience: in other words, what "disabled" really means in that context is simply a short hand for "disabled by a discriminatory environment that was not designed to meet my accessibility needs as a person with impairments." So in that context, "Disabled" is a reference to the environment and its effect on the person. So, NOT the same kind of connotations it has in the US context.

Possibly there are contexts where "Special Needs" is okay too, and maybe even makes sense within that particular context. (I mean, not just among parents or educators, but among people with disabilities choosing the term for themselves.) But I did raise the question in that group because it's not a term I hear from people with disabilities, it's something I tend to hear from outside the community. So I had wanted to see if I could open up a dialogue with potential for learning on all sides.

So far, it seems to me that the people in the referenced thread who are adamantly defending the term all seem to be parents etc. Which by itself is fine--parents certainly very much have a role in the disability advocacy movement too. But what concerns me is that it's not clear if any of them have consulted with people with disabilities other than the ones they've raised to think the term is acceptable! Or where this term originated from (did they first learn it from people with disabilities, or did they learn it from other parents or professionals?) Or if they are even aware of anyone in the broader disability community other than parents and families like themselves!

I think it's still a group worth joining. Unfortunatley I haven't the energy to deal with the people there right now, and might not have it for another few weeks (busy semester for me, and will get busier before it calms down). So I'll have to leave it to others to gently expose them to a wider range of perspectives on language and educate them about the difference between taking the lead in disability advocacy and working as ALLIES in the movement. That's something that can only be done by joining the group and participating in the dialogue there.

But, of course, it's up to each of you in accordance to your own personal beliefs, attitudes, energy levels, preferred strategic approach, or whatever.

Dave, thank you for highlighting this group. I know you're in contact with a great number of people who have a more enlighted perspective on disability advocacy. Maybe a stronger infusion of numbers from people who really "Get It" will help shift attitudes within the group so that people can focus on fighting hatred toward people with intellectual or other disabilities.

Sarah Heacox said...

I'm in, Dave!

You do know that March 31 2009 is the Special Olympics' official "Spread the Word to end the Word" Day to get people to pledge to stop using the R-word, right? John C. McGinley (the actor from Scrubs) is doing media appearances to raise awareness. Looks very cool. Links:

http://www.specialolympics.org/03-31-09_Spread_the_Word.aspx
http://www.r-word.org/

Anonymous said...

i'm in nj and i'm in.

mike stanton said...

I'm in

Mike in the UK

Anonymous said...

I'm in and hopefully everyone I know will be in too.
Jamie
California

Anonymous said...

I'm in and I sent invitations to everyone in my friends list and asked them all to do the same!!

anne said...

Hi, I'm from Edinburgh in Scotland, and I joined up.

Anonymous said...

I am in!

Spinningfishwife said...

And by total coincidence, another one from Edinburgh, Scotland.

Linda said...

I'm in! Dublin, Ireland
LinMac

adrienne lauby said...

I'm in.

Anonymous said...

Coming out of lurking to say that I'm in! I invited all of my friends to the group as well.

Catriona said...

I did join the community, because I don't want there to be any hate speech on facebook, but some of the things you say are inaccurate.

I don't think facebook tolerates hate speech against people with disabilities more than other kinds of hate speech. I searched for the word 'nigger', for instance, and there are lots of offensive groups similar to the 'retard' ones.

Also, the communities that the group names don't seem to be for posting pictures of people with intellectual disabilities and laughing at them, it's for pretending to be a 'retard'. That obviously isn't acceptable either, but it's better than ridiculing real, individual people.

Abby said...

I'm in, and will invite the rest of my contacts...

Andrea Shettle said...

I see that a lot of people are joining the Facebook group and also clicking on the "invite" button to invite their friends.

I wanted to point out that another way you can spread the word about the group is to click on the "Share" button so you can post a blurb about it on your profile. For friends you have invited, seeing your blurb can be a reminder to respond to the invitation. For friends you didn't think to add to your invite list (or if you're just not comfortable bombarding friends with too many invites to too many groups or causes etc.), it can be another way to expose them to the group but in a less intrusive way.

Lili said...

I'm in, and invited 44 others.

Gün Osborn said...

I'm in, thanks to your blog.

wordsong_girl said...

Thanks to your blog I'm in--Vancouver, BC

wordsong_girl said...

And, thought you'd like to know that as editor of DownLink, the Lower Mainland Down Syndrome Society (LMDSS) newsletter, I included an article about your Words Hit Like a Fist cards. The LMDSS had two thousand cards printed and we sent two to all members with their newsletter, inviting them to pick up more if they want.

Vicki

Myrrien said...

signed up to the group some weeks ago

Ettina said...

I don't use Facebook and have sworn never to use it because I've heard once you join you can never really get 'unjoined' because they'll keep your data.

Anonymous said...

I'm in!
Christa G.

shantimama said...

I am in and I sent a request to join in to over 100 other people. Several have already joined the group. The best part was having another discussion with my shcchool aged children about why that word is so horrible.

kvanryzin said...

I'm in

Resa said...

I'm in! - Resa in St. Louis

Phil Schwarz said...

@AndreaShettle: Do you think it would be useful for me to join the thread you and Jypsy reference on Facebook, and post a link to the paper on ally roles in the autistic self-advocacy movement that I contributed to Autreat 2004? (At the risk of seeming to be tooting my own horn, but it's the best way I know of getting that content into the discussion...)

Phil Schwarz said...

(Forgot to add: I've been a member of that Facebook group for a long time, but hadn't followed the recent discussion, until it came up in conversation among Autism Hub members.)

RusW said...

I am so IN !!

Rus
Suburban Philadelphia, PA

Andrea Shettle, MSW said...

Phil Schwarz:

Yes, please. I think I've read the paper you reference (though had forgotten the author and where to find it) and I think it would be helpful for some of the participants in that group to read and (I hope) think about.

If you happen to have anything more specific to parents and why it is important for them to draw upon, not only their own experience as parents, but also the experiences of adults who share disabilities similar to their children in order to be true allies -- then that I think might be helpful for them also. To me, the most disturbing thing is not their language (as I say above, there are reasonable grounds for people in different contexts and linguistic/cultural histories to reasonably prefer different terminology) but the fact that they seem to be consulting only other parents and siblings in deciding what is correct without referencing people with consulting themselves. And they don't even seem to see that as a problem.

Amanda said...

I joined and wow andrea some people are determined to see you as condescending (even said "and someone else saw it too so it must be true!").

I tried to write why that wasn't true but the awful captcha thing ate me and then I couldn't get my text back and so I wrote something scrambled and short and posted a link to one of Dave's writing thing because of a separate problem I was seeing, and left.

Phil I already posted a link to your whatsit ally thing.

Anonymous said...

I'm In & thank you for sharing!

Liz from Markham.

:o)

little.birdy said...

I'm in!

nolaffing said...

I'm in!

Chicagoland , Illinois USA

Forty-something NOT too old for Facebook :-D

We valiantly battle the villains: mental illness and chronic illness here, always happy to support another cause!

Em said...

I'm in! Royersford, PA representing.

Kateryna said...

I am in.

Andrea Shettle, MSW said...

Amanda,

Wow -- I finished reading your posts, and they cover pretty much everything I would have wanted to say but didn't have the spoons to cope with (not simply in terms of the writing process but emotionally). Thanks so much for this.

Brenda said...

I'm in!

Defying gravity said...

I'm in.

Anonymous said...

I'm in

Laura, UK.

Anonymous said...

thanks jypsy for posting this to the group i read daily
i don't/won't get a FB account BUT i am a federal government employee with a LOT of contacts so...

in that way I'm in

Renee in Ottawa, Canada

Tori McD said...

I'm in!
Tori from Omaha, NE USA

Suelle said...

I'm in, I'm in St. Louis, Missouri, US

Anonymous said...

I'm in! From Laura in Edinburgh, UK

Sarah A. said...

I'm in!

- Sarah from Hopkins, MN

Anonymous said...

I've been in since Andrea first mentioned the group, and it's been fantastic to see it grow so quickly! Sure, there are differences of opinion, but with so many different people from so many different places, it's bound to happen.

Jami said...

I joined

Casdok said...

Im in!

Amanda said...

I could really use some help with the whole explanation of how not to read and respond to the messages of people with very atypical social communication skills. I can't believe I went to all that trouble just for a guy to tell me I'm long-winded and trying to marginalize him and trying to act morally superior.

Ssejors said...

I'm In and I have invited ALLLLL of my Facebook friends and Family on Behalf of MY SON! Hunter James Ross who will be one on April 2nd. He Has DS! Let's see how many of my 300 Friends Join up as well! Thank you Dave!

amazonmidwife said...

I'm in.

Amanda said...

I could use even more help now. I've written all I could write and he now says "be honest"... I've been honest the whole time. If anyone familiar with autistic communication styles can explain what I couldn't explain, from an outside point of view that isn't mine, I'd be really grateful, because it's just being taken as excuses, and this hurts a lot to be insulted for social skills stuff in the middle of a thing that's all about how not to insult people with DDs. I don't get it, I don't know why things like this always happen, I don't understand, but I know better than to post anything more myself. I just hope nobody believes the strange things being said about me and Andrea. And I'm clean out of spoons now, I have about two hours of possible writing time a day and I used more than that yesterday so I'm in negative spoons in some areas... and still the insults follow, why I don't know.

Cynthia F. said...

I'm in!
Los Angeles, USA

tekeal said...

me too. switzerland.

Dave Hingsburger said...

Amanda and Andrea, I do not have a facebook account (have no intention of getting one) and cannot enter into the discussion. I have read the discussion though and I think you both have been clear, honest, and balanced in what you've said. For the record, I don't think either of you were condesending or 'morally superior' in either your tone or your approach.

Sharon said...

I've read the discussion too, and have seen enough there and to a lesser extent elsewhere to let make me decide that though I was in, I'm now out again. After all the effort Amanda went to, and how clearly and carefully she put her important and worthwhile points, just to have her words twisted, to have meaning read into them that just wasn't there, to have someone believe he can sense the hidden intentions, well...no, I'll not be part of that. I did contact the group's creator about it, but I haven't seen any steps taken to reign in the man who has been so insulting to the disabled people on the group itself.

Anonymous said...

I'm in and I invited all my fb friends to join.
Sharon

Reformed Anon. Girl in Pain said...

the agency I work for got this from Manuela all the way in the nations capital! the word is spreading about this group and I plan to invite not only my coworkers on facebook but every one of my friends! all 300 and some odd of them!
Soli Deo Gloria!
REformed girl

miss mouse said...

I'm reluctant to leave much info. about myself on the web, but this cause is too important to keep silent. So, I'm IN!

Amanda said...

Oh I'm still in, I'm just not actively reading or posting at the moment.

Anonymous said...

We are all human with feelings, wants and needs. We are all here on earth for the same reasons. Everyone needs to be treated with dignity and respected. Remember the "golden rule", treat others as you would like to be treated.

Think before you speak and make an effort to say something positive as that will go along way.

Melinda said...

I joined after reading your blog. Just reading your post left me teary eyed... I am always surprised at how cruel an individual can be to another....Let's hope we can make a difference..

Anonymous said...

I'm in! Shirley from Kingston ON

Lianna said...

I'm in, too. I have the link to the Special Olympics campaign to stop the use of the R word on my blog. I recently de-registered from Facebook. I didn't realize that there were such hateful groups on there. If you visit YouTube, there are many and I mean MANY violent, vicious and malicious videos and comments about people with Down syndrome. It's heartbreaking to know that any online organization would tolerate this under "free speech". Anyway, I definitely want to be part of the resolution to stop the R word!

Anonymous said...

I'm in!

Liz
Cambridge

Michele said...

I'm in for sure!!!
My eldest has Down syndrome and we are amazed at how many people, friends and family included, that use the "r" word.
It is hurtful to both individuals with disabilities and their families and friends.
I re-educate whereever I go in regards to this "r" word especially the youth I am in contact with daily at an elementary school.
One person at a time will make a difference!!!

Tom Smith said...

I'm out. I hate language control and think it does more harm than good for the "cause".

Tom

Jay said...

I'm in. I read your blog everyday at the start of my workday as a social justice advocate and pastor with people living in poverty/homelessness in our neighborhood. And I'm also a proud disabled person.

Colleen said...

Hi Dave:

I'm in and I am inviting all my students to participate too.

Colleen

Anonymous said...

I'm in! and the number of members is over 10,000 right now. Thanks for the info -- I've posted it on my facebook page!
Janet from Columbus Ohio

Teresa / Kitty Elsmore said...

I'm in.
Teresa Elsmore,
Thistle Foundation, Edinburgh, UK

Mrs. Muffin said...

I'm in. And excited to hear you speak at a conference in June!

Louis said...

I'm in. My FaceBook profile is:
http://www.facebook.com/people/Louis-DePointe-DuLac/801599801

I have been a fan of CTF since almost the beginning; a friend directed me here (a friend from wheelchairjunkie.com ).

Thank you!

Jean Sirius said...

i'm in.
jean in oakland, california.