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redjennphd
04-09-2005, 05:30 AM
Hello fellow screenwriters:

My name is Jennifer and I work alot in the film and entertianment industry as a disability technical consultant from script concept to on set to editing. I have helped writers who would like to include a deaf or disabled character but don't know how to do so. :Huh: Or perhaps don't have the access to expertise in these subjects to help them with advice on developing characters, working on the actual film (when you sell it, and I KNOW you will!). :Clap: If you have any questions about incorporating deafness or disabilities into your scripts (whether it be in theme, subject or a character), feel free to contact me or see the website on my signature to find out more about what it involves.

As a member of the tri-union Performers With Disabilities (PWD) Committee and president of the PWD Task Force, I volunteer to work with other performers to get access and work in disabled specific or non disabled specific roles. I myself was not born disabled or hearing impaired and when I lost my hearing I got my PhD in Psychology :Lecture: with a specialty in deafness & disabilities and am a fellow on the American Board of Disability Analysts and other similar organizations.

Deaf & Disabled persons are everywhere and every able bodied person could become a disabled person at any time and would love to see more writers include them in their stories (film or otherwise). :Cheer:

Hope to hear from some of you if you'd like more information! Would like to say "rock on", but will say "Write On!"
Jennifer

Maryn
04-11-2005, 04:48 AM
Nice to have you join us here with such a generous offer, Jennifer.

I'm not a screenwriter, I just like to check out what they're saying. Any help for a novelist who's using a 'little person' as a supporting character and already has questions arising from her inclusion? I've know several little people in the past, but no one now.

Even if that's outside your expertise, it's good to see that help is available for those who'd like their screenplays to reflect the real world, where none of us is perfect.

Maryn, shockingly imperfect

Mac H.
04-16-2005, 06:46 AM
Hi Jennifer.

Nice resume. But I was looking forward to seeing a list of 'Helpful Hints' in incorporating disabled characters into my scripts.

Would you be able to provide some hints for us to consider ?

Mac.

Joe Calabrese
04-16-2005, 04:19 PM
Hi Jennifer and welcome.

Since your post is more an ad for your service and you didn't really offer any advice in the post, I moved the post to self promotion. Thanks again for letting us know on your service and good luck.

Joe

Maryn
04-16-2005, 05:28 PM
What a tactful guy you are, Joe!

Maryn, whose daffodils may bloom today

redjennphd
04-21-2005, 04:18 AM
:Ssh: First I'll start with 2 comments made about the original posting:



Hi Jennifer and welcome.



Since your post is more an ad for your service and you didn't really offer any advice in the post, I moved the post to self promotion. Thanks again for letting us know on your service and good luck.

Joe

What a tactful guy you are, Joe!
"My opinions don't matter much, unless they help you get a sale. If so, you better buy me lunch."


You see joe, your quote says it all: you are all about self promotion and actually think that your advice will help someone sell something. Instead you are taking it upon yourself to edit and play with the first ammendment and put someone's free speech (and EDUCATIONAL not PROMOTIONAL) piece in another place on the boards where it may never get seen.

Actually I don't think that's tactful at all. Clearly information and wanting to educate writers about the other people that exist in our world to include them in stories, poems and scripts is instead looked at as "SELF PROMOTION"????
It was an article and educational information for all writers who should have access to it so all can learn about including this basically NON EXISTENT population in novels, TV & Film. Putting it in self promotion, and a comment by someone saying what you said is "tactful" had to have been sarcastic because if it wasn't - then you are exactly the people who need to read and learn to include others in all writings. Step outside your safe world and into the reality that is living with disabilities and take something and LEARN from it. It was in NO way 'self promotion' and you moving it there was putting MY information out as if I am putting it there as an advertisement which it is NOT. You should not be the judge and jury on what is and is not education versus self promotion.

In explanation to the information and why it is not a direct 'how to" :

Hi everyone.

The reason there is no 'advice' set forth in the post is that that kind of advice could take up an entire book. It was a way to introduce the subject to writers and see that hiring a technical assistant/producer who works with writers from conception is something that needs to be done. When and if there are projects being done, I often don't hear about them until the script is done, with lots of stereotypes and incorrect infomation included and thus the job of the technical advisor/producer is made much more difficult or the project becomes less of a truly believable project which perpetuates the stereotypes of disabled people and also perpetuates the belief in the business that just throwing in a character or theme in a story is enough to make it believable, acceptable and worth watching hiring non disabled actors and not having the full information needed to make the project truly honest and based on assistance given as part of the job in development.

Since all disabilities are different and each person in each category of disabilties are different, I can't just write something giving 'advice'. Then I'm basically writing that part of the story. However having worked with writers many times before from the concept on, and where they send a script and I can advise on where to include a disabled character or provide the advice or consulting for the project, I can't tell someone who or what to include but since ultimately from page through casting through production and even editing, involve a great deal of work, there have been deals made that there is a co or 'and' writing credit given when developing the story and contractually am put in to be the technical advisor that goes with the project.

So I hope you understand that I can't just write a simple piece to a thread that could include information on every disability or how, who or why to include someone is something that then is where I'm already working on the story to help find a place with each individual story and each indivudual writer, one on one, where it can't be written in a threat or thrown together in a short piece where actual general information on how to do so or how to create it is still putting me in the actual development and creative process of the script. Which is great, but it can't be done in one thread. The amount of information and how to kind of advice on including the disabilities of some sort, role, mention, and anything from lead roles to mentioning a character that may not be seen or things such as that, I hope you can understand why it cant be just written out to give away all the work it takes to make it happen and the creative work and writing and inclusive and cooperative work it takes to create these projects are something that cant' be done on a message board.

This is the type of a thing that could be put in a large book but otherwise, by being approached by individual writers who have script ideas, or even scripts completed and want to add a unique character that is disabled, or somehow include the essence or even to scripts that are already in development for production, these things can still be added by adding a character which involves a whole different area of advice and consulting which is why it is part consultant/advisor/writer/producer kind of role.

The technical consultants on shows like Law & Order, any medical show or film, any police film or show have techincal consultants who most of whom, used to be cops and work in every aspects including being on the writing staff to make sure these shows are as well done as they are and which is why they win so many awards: because the techincal advisor/producer has made sure, at every moment from script conception thorugh editing, that particular specialty they're hired to do, is being done appropriately, truthfully and that's why these shows win awards and get so much attention: because they are so realistic and so true to the nature of the characters - because there is someone there who is working from point 1 to make sure it works that way; with the writers, directors ,producers, actors, props, set, costumes and so froth. The same goes for including disabilties: there are projects done that don't include that and think they can just stick it in there somewhere or mention it or just hire the disabled actor (or not) but nothing is being done realistically and it's nto the actors job to know what is happening in all areas of the project to give it the reality that does not show stereotypes of anyone in the project.

So this is why I can't just make a checklist of sorts saying do this or do that or giving ideas in a bulleted list of 'ways to include the disabled'. It doesn't work that way and doesn't help anyone with one sentence that merely gives someone an idea that goes from that part of script development to the screen and in the old game of telephone with 2 cans and a string - lose everything realistic in the translation and make the project not easily fixed by bringing in someone last minute.

I've done both: beginnig to bring brougt in last minute and I can do both but being brought in last minute one week before filming for casting and then hving to fix script issues and other important problems that occur can be easily fixed by involving the expertise early on. Like having a pilot flying the plane who did the take off and let the student do the run and the landing.

The techs who work and write for these other shows are on set 24/7 and working in every aspect to assure realistic views of the police department or whatever else the specialty is. As of yet there is no category for excellence in this subject for the Emmy's or Oscars, but I have won all the awards possible to win on projects I've worked on - everyone. Whereas other shows/films that have been released without the TA set up have been absolute disasters where the actor has not had any leadership, the writer hasn't had anyone lead or help them (or have used interpreters and so forth, who do not have the qualfications to do these jobs).

The projects set next to those who include this work from the start are left as roadkill and leave audiences with the same old stereotypes that they've seen or with an untrue presentation of the disability or the character or story, that leaves the disabled fighting the same fights regularly because it was shown in a movie as being incorrec or having any progress that has been made, set back years, to where those subjects portrayed are left without any positive or realistic image to show the truth. It's not just about including the disabilities in selling the script and the PR and attention it can bring (which it does) but the work needs to startin the development by working with someone who does know how things are said, shown or expressed.

When I worked on one move for ABC and a TV show for Disney I was on the phone and faxing back and forth and having meetings regularly so the script and the portryal would be at its most realistic and then casting the best people for the jobs who could bring that to live. If I did that kind of work with every person who presented an idea to me on a regular basis to work on this, all my time is spent on that and then when do I get to actually work? I was paid for these projects. The writers wrote their rough draft (which was not close to the final) brought the knoweldge of having them have to hire a qualified individual who specilizes in this sort of thing brought in and paid, and thus the scripts were improved to be excellent and truthful works that truly came together forthe project. Just as the screenwriter needs to get paid, or rights need to be paid for or other research has to be done and worked on for the script, I also need to have a way to live while working for the art.

I'm sorry that I did not include specific ideas. The title of "Enabling the Disabled" did not lead toward : "this is a how to article on including disabled stories, themes or characters". It was what it was: simply saying, include the disabled in your projects: we are everywhere, just as the African Americans had to fight to be included and Native Americans to be cast in their roles ; all involved having someone there who specialized in it: a dialect coach, a techincal advisor, producer etc.,and now its time to show disabilities in all corners of the globe where we all live and portray them in our projects in roles that are not just 'disability specific' but in roles where they are not the 'poor disabled person" but the judge, lawyer, whatever. so when I did write it I'm sorry if some seemed to get that it was an instructional piece on exactly how to do that instead of just a piece on inclusion.

That's it. I'm sorry if you were expecting something else but I did try to find a title that approached the subject for what it was.

And being put into another category where everyone might no see it to have the grain of that thought put into their head is a conflict. Every writer on here wants to sell their goods, puts their work out there for people to see in hopes that someone may see it or read it and they can compete in writingcompetitions which makes the site in and of itself 'self promotion' of their wares. My thread including this one, are merely informational in nature to include this.

:Soapbox: In reading all the writings on the boards and so forth, you can see where this subject is not touched on at all, and I felt it needed to be brought to attention of the writers who can create these roles, ideas and characters in their writing and then knowing one connection that would be available for professional consultation and workon the project to guide it to the truths that aren't shown for the disabled: instead we're shown as victims or happy go lucky wheelchair ballerinas.

We fit the roles of judge, DA, the doctor and more,:Smack: and it was just a post to help to educate the members on how to be more inclusive in their writing. but separating it and putting it in a self promotion instead of like any other educational piece of information to improve, educate and enlighten writers saying its an ad for work is not true and is unfair.

I'm working as a producer and coordinator for an international disability film festival - volunteer. This information and the post were given to hopefully plant the seed that inclusion is what is needed to truly create a world through our stories and scripts, books and poems to include people of all kinds and not to ignore the visibile or the invisible disabilities that surround us in every day life.

Hopefully this will give you more information but being pulled by saing it was not educational so it was put into 'self promotion' is not tactful; its judgemental and is denying that putting information out there that is clearly not, and no matter what you do is taken to the wrong intention istead of : hey how about including deaf or disabled people in your projects is inappropriate If i wantd to do that i'd say write a role for a deaf woman with 2 phD's :Lecture: :Lecture: and here's my picture and resume. The links that were added were because there was more extensive informatoin on exctly what a techincal advisor does. if people who read the post had actually gone to that you would have found LOTs of useful information on why it's so included.

if you were writing a script on the NYPD would you do it without trying to get an actual member of the NYPD to help you make it reailstic? or would you write a story on the peronal effects that happened on 9/11 from your apartment in Idaho as opposed to talking to somene like me who was there? No i doubt you would - that is the information I was passing. But when someone takes the writing and puts it into self promotion instead of in threads where all writers can benefit from the knowledge is wrong. And comments like "how tactful" show just how not tactful it truly was. :Shrug:

Sorry I tried to help educate the readers on subjects that should open minds as writers and as human beings but it seems that in education - there is still the same of problem of people assuming its self promotion instead of educational. But you should leave articles that are there to reach all members who should know how to write what they may want to write in a positive way and not continue to write disabled characters as the pitiful person that people stlil tell their kids not to stare at. Being a deaf and disabled person - I found your taking my writings and information that it was clear a few people found interest in, and chose yourself to move it to an area where it would see like I'm selling lemonade by the roadside, is inappropriate.:rolleyes:

For those who thought you were getting a cornocopia or a book of directions on the subject, I did explain that above but feel free to contact me if you have any specific questions. Regading the project on "little people", I can help you with that or put you in contact with someone who can. I'm glad to see one person appreciated it for what it was a small piece with pieces of info take from the title "Enabling the Disabled". I've written articles for Emmy magazne on "Demystifying the Deaf" and other publications on this subject and no one is looking for a how to, hold your hand give me everything I need to write the story. If you have a story and want to include this type of thing plese feel free to contact me. :hi:

Although now that Joe has taken it upon himslf to put it in a self promotion area, I doubt very much the essence of the post which was the seed of inclusion will ever be seen because actual editing and someone else taking freedom of speech and deciding WHERE that freedom belongs.:Ssh:

Joe Calabrese
04-21-2005, 04:36 AM
First off Jennifer, don't get all huffy over a forum maintenance issue.

Your post was moved to the appropriate forum, not hidden or deleted. There is still a link to it in the screenwriting forum so anyone there will click on it and still get to the post you made. Anyone searching thread titles will still see it and anyone who goes to self promotion will as well.

All I did was put the cereal box in the cereal isle, not in the deli where I found it.

I'm sure your expertise and insights on disabilities is valuable to those who need it. I myself have a 18 month old foster son who is blind and severely mentally and physically handicapped due to shaken baby syndrome and I have nothing but the deepest admiration and respect for those with disabilities, but when you come to my forum and tell everyone to check out your website or email for info, that falls under self promotion and I am bound to move it.

No hard feelings, just the rules state that posts like yours goes where I put it.

PS. If a cop, marine, doctor, lawyer, or any other professional wrote the exact same post you did but with regard to thier field of expertise, I would move thiers as well.

Joe Calabrese
04-21-2005, 04:56 AM
And one other thing.

My signature is not promotion in anyway.

I offer advice and critique on the screenwriting and screenwriting critique forum for anyone who posts, whether it be a formatting question or a structural problem with thier work. I do not get paid for offering advie and I do not direct people to my critiquing service which I charge.

That is the difference between you and I. If you stated in your post that you would offer advice in the forum (not outside of it) to questions asked, I would have left it there, but you didn't do such and instead directed people to your business website.

Birol
04-21-2005, 05:29 AM
For those who may be a bit rusty on their Social Studies lessons, the actual wording of the First Amendment is listed below:

Amendment I

Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the government for a redress of grievances.

Birol
04-21-2005, 05:40 AM
Jennifer, since AbsoluteWrite, Jenna, or Joe are not representatives of the congress or any other branch of the government, the First Amendment's Freedom of Speech language does not apply to you in this situation.

The First Amendment clearly protects the citzenry and owners of presses (for our purposes we'll interpret this to include internet forums) from government intervention in what can and will be published. It does not obligate any owner of any press or any citizen to publish or listen to anything written or spoken by another.

Since neither AbsoluteWrite or its owners are representatives of the government, the First Amendment protects them government intervention or censorship, not you.

The First Amendment does not require AbsoluteWrite or its owners to publish all material that is brought to it and it does not mean that members of the public who avail themselves of AbsoluteWrite's services can do so without regard to the rules of conduct established by AbsoluteWrite's owners and operators. As a duly-appointed forum moderator, Joe is responsible for maintaining the board according to those rules of conduct, which he has done.

jdkiggins
04-21-2005, 05:50 AM
:Clap: Joe. You are so very cool, calm, and collected.:Hug2:

:ROFL: Birol.

jdkiggins
04-21-2005, 06:18 AM
To Jennifer with 2 PHD's,

Birol already stated what I was going to say about Joe doing his job very efficiently as moderator here at AW.


If i wantd to do that i'd say write a role for a deaf woman with 2 phD's and here's my picture and resume.

Are you a deaf woman with 2 phDís, or a woman with 2 phDís who happens to be deaf?

I'll simply add this as a take from the movie the American President.

My name is Joanne Kiggins. I am disabled...and Miss Jennifer your post is where it belongs.

Thank you for your interest. Now, if you're willing to answer questions our writers/members may ask here at AW as to different aspects of disabilities and how they might use certain words to describe certain things, great. If not, oh well, I'm sure we'll all stumble along without you.


I'm sorry that I did not include specific ideas. The title of "Enabling the Disabled" did not lead toward : "this is a how to article on including disabled stories, themes or characters". It was what it was: simply saying, include the disabled in your projects: we are everywhere, just as the African Americans had to fight to be included and Native Americans to be cast in their roles ; all involved having someone there who specialized in it: a dialect coach, a techincal advisor, producer etc.,and now its time to show disabilities in all corners of the globe where we all live and portray them in our projects in roles that are not just 'disability specific' but in roles where they are not the 'poor disabled person" but the judge, lawyer, whatever. so when I did write it I'm sorry if some seemed to get that it was an instructional piece on exactly how to do that instead of just a piece on inclusion.

Just so you know, I've enabled myself, thank you very much.

If youíd like to see a bit of writing that includes disabilities, feel free to roam over to AWís Freelance Writing section in Personal Essays. Youíll find a disabled woman writing about her disability in the essay Perseverance.

Have a wonderful day.

Joanne

Birol
04-21-2005, 07:11 AM
Jennifer,

I noticed on either your website or in your profile, I'm sorry, I can't remember which, that you lost your hearing as an adult. How long ago did that happen? What adaptations did you use to begin communicate with the public (store personnel, etc) who did not know sign language?

JennaGlatzer
04-21-2005, 12:19 PM
Huh? What? I almost moved this to the story research board, but had to read it again...


It was a way to introduce the subject to writers and see that hiring a technical assistant/producer who works with writers from conception is something that needs to be done.

So... what you're saying is that you're advertising. You're a technical assistant and you're telling people to contact you at your website to learn more about your services. That's very, very different from volunteering to answer questions freely, which would NOT be self-promotion.

You're on extremely thin ice. Joe made the right decision, and I do not take kindly to people who fly off the handle about my moderators. "Free speech" does not apply on a privately-owned message board... and self-promotion belongs on the self-promotion board. The only "educational" thing about your first post was that you were trying to educate people into hiring you.

Mac H.
04-21-2005, 01:29 PM
Hi Jennifer.

I suspect it was my reply that lead to your post being moved. Sorry if you're upset about it. But I really don't understand why you are upset. Joe has just made your services MORE available.

Originally only people who visited the screenwriting forum would see your announcement. Now, not only is your announcement still available there (via the original link), but everyone who visits the 'Announcements' forum will also see it. I've often been tempted to post in the wrong forum just to get that double exposure !

Honestly, you seem to be totally misunderstanding things. I replied to your post because I saw the topic 'Abling the Disabled - Helpful hints' and wanted to read the helpful hints. I want to learn about the topic of writing roles for disabled characters. I still want to know. Joe hasn't stopped me from learning about it.

It's good that you are available as a technical consultant, but that is not particular helpful to me. I write screenplays as a hobby, and the odds of even a beautifully written screenplay getting made into a film is somewhere well beyond 1 in 10,0000. I'm sure I could hire you for a few days consulting, but that simply wouldn't make any financial sense.

If you want to get business via message boards such as this one, you will be a lot more successful if you throw out some 'burley' while you are fishing. If Joe does get some work from visitors to the board (such as me) occasionally, it will be because people like myself have seen that his answers are quite useful and want to get a lot more of them.

Your speciality may mean that you can't give general comments, but some anecdotes of your experiences may give us some helpful insights.

One of the reasons I would like some hints on writing for disabled characters (apart from the obvious personal reason) is that I've toyed with writing a RomCom with a support character who is severely disabled, but have avoided it because I want to do it well.

I did visit your website to learn more, but couldn't find any useful information on it. Sorry - I'm sure it's there somewhere. Also I was rather dissappointed that it seemed to be totally against what I assumed you were for.

Sorry - but the website is NOT disability friendly. Phrases like 'click on the photo to the left to ..' are totally useless for blind internet users. The photos should have had text descriptions to allow non-graphic browsers to navigate them.

If you want to make your website accessible for disabled people, a good start is running it through the 'Bobby Approved' filter, which will indicate where non-graphic browsers etc may cause problems.

Good luck. Looking forward to hearing your war stories ....

Mac.
(PS: If you want to avoid making assumptions about people before replying, click on the hyperlink of their username. You can check their past posts and learn quite a bit about them.

I bring this up because you mentioned that you'd read all the writings on the board (and so forth) and you could see that the subject of writing for disabled character had not been touched on at all.

Not true. The topic was touched on only a few days ago in a recent post of mine. My post was in reply to others who were discussing this exact issue.)

Mac H.
04-21-2005, 03:20 PM
Jennifer:

Hi again. I was taking a quick look at your site again (to try and find the FAQ section) and noticed something very worrying.

You really, REALLY, REALLY need to edit your biography.

Many of the awards you have seem to be identical to well known scams.

For example:

* Your many 'Who's Who' entries should probably be removed.
See the 'Bewares' section on this board for a discussion of this well known scam.
* The awards by the 'American Biographical Institute' such as inclusion in the 'Two Thousand Most Notable American Women' and 'Woman of the Year' for several years running are also scams. Sorry

It is a shame, because you do have many other valuable awards - but you should definately remove the scam ones.

It would also be worth mentioning the university where you earned the 2 PhDs (as well as your undergraduate/honours degree) as unfortunately there are many disreputable 'universities' that have made this honour meaningless unless you mention the University name as well.

Good luck,

Mac.

Maryn
04-21-2005, 09:53 PM
I can't help noticing that the one concrete question posed (mine) received no reply, not even an acknowledgement. Pfft, I don't need someone with two PhD.s to ignore me online--I got someone just like that a home! (Although I can get his attention at times...)

Maryn

JennaGlatzer
04-21-2005, 10:13 PM
Because I write extensively about disabilities and mental health issues, I will now do the "impossible" and offer a few tips about writing about people with disabilities! :)

1. Use "People First" language. Instead of mentioning the disability first, mention the person first. That is...

(Good)
A woman who is blind
(Bad)
A blind woman

(Good)
A kid with Down syndrome
(Bad)
A Downs kid

(Good)
A mother with a disability
(Bad)
A disabled mother

2. Wheelchairs can be a sticky issue. "Wheelchair-bound" is not a favorable term in the disability community. Bound is a word that emphasizes limitations. "Person who uses a wheelchair" is better-- remember that it's the person who has "control." The person uses a device; the device does not define the person. Sometimes you have to unlearn the "rule" of using as few words as possible in favor of slightly clunkier but more empowering phrasing.

3. Be careful of using words like "victim," "afflicted," or "sufferer." My brother has Down syndrome, but he doesn't "suffer" from it and doesn't consider it an "affliction." Many people with disabilities would much rather that you don't pity them, and words like victim and sufferer just add to the image that you should pat them on the head and say "there, there."

More?

jdkiggins
04-21-2005, 10:21 PM
:Hug2: Jenna.

by jdkiggins

Are you a deaf woman with 2 phDís, or a woman with 2 phDís who happens to be deaf?
Exactly the point I was trying to make with Ms 2 phD's, which by the way should have been two PhD's. :)

Maryn
04-21-2005, 10:50 PM
Not with the intention of hijacking this thread, but I'd be interested in knowing how the disabled view the phrase "differently abled," of which our school district is quite fond.

Maryn, who now returns us to our regularly-scheduled thread

Birol
04-21-2005, 10:50 PM
Jenna, I was thinking of your brother and Greenwolf and a few other people on this board and all of the books and articles individuals on this board have written dealing with individuals with disabilities when I first read Jennifer's post. It is rather obvious she did not take the time to study or know her audience before posting this, isn't it?

I'm also noticing that since attacking Joe she has failed to respond to anyone else. Nice of her, huh?

Joe Calabrese
04-21-2005, 11:03 PM
I am so hurt from the attack (not), but I have to say that even though I am very much aware of people with dissabilities, after her posts, I do look at my foster son (who is severly disabled) with a slightly different perspective.

My hope is that he grows to be a productive person and doesn't feel that so called "normal people" will overlook him or feel less of him because of his special needs.

redjennphd
04-21-2005, 11:20 PM
Maryn:

You are not being ignored by your question but I don't spend all day online or on this site to check threads and so forth, so I wasn't ignoring you. Please don't think that a day or a few days perhaps, would denote ignoring your question. I just got online today and saw all the responses and its a lot to take in and digest and find a way to respond. Therefore, I apologize for your very valuable and interesting question you posted, and I'll try to give you my take on the subject:

"Not with the intention of hijacking this thread, but I'd be interested in knowing how the disabled view the phrase "differently abled," of which our school district is quite fond.

Maryn, who now returns us to our regularly-scheduled thread"

The use of the word disabled or differently abled, just like the words used such as "hearing-impaired" vs "deaf" are all very subjective and also individual to each response. None are really considered 'wrong' or 'inappropriate' in a general way. I think they are looked at differently by everyone. Many able bodied people want to be as politically correct and respectful as possible by using terminology like "differently abled" versus "disabled". There are deaf people I know, actually most of them, who hate the term "hearing impaired"; while I, as someone who was not born deaf, do not find the term at all offensive. Nor do I, as a disabled person (spinal disabilities from domestic violence), find being categorized as "disabled" a problem. I really think it's a personal view and opinion of the deaf or disabled person who is viewing it or hearing it, that may want to be viewed or labeled by a terms which for them, provides self-empowerment, versus someone else's description of their person.

That unfortunately is the only answer I have for you: each person looks at each term in their own way and from their own set of circumstances. I think erring on the side of caution and respect that you feel as a writer is the safest way to go and then no offense would be taken because you are not writing anything with a negative intent.

I hope that helped a little.

(*one note: deaf and Deaf however are two different things as described in the Deaf world. Persons described with a "D": denote those who live a culturally deafl life, versus "d" which is used to describe deafness or a person who is deaf who perhaps became deaf due to age or does not use sign language or live in the "Deaf Culture" Community. "D" Deaf persons, use sign language and have a different view of perception as a culture not as a handicap as opposed to someone who is deaf, who may not want to involve themselves in the Deaf Community. For statistical purposes: the population of deaf persons is larger than the population of Deaf persons. The Culturally Deaf, is a much smaller population of people with hearing loss, statistically, in this country.)

redjennphd
04-21-2005, 11:49 PM
For those who are mocking my degrees, or my lack of punctuation or spell check, or perhaps run-on sentences: give me a break. I'm not writing here to be judged on my thoughts and typing them as fast as I can think them. (BTW some of you should spell check your own.)

Saying I didn't check every post on the board (and someone said I had said I had seen every post; which I did not say), and don't know my 'audience'. I say you're wrong: I do know my audience. Instead of asking intelligent questions, specific based on something you're writing or want to write, you want to go into 'bogus' awards and so forth. Perhaps that's just jealousy rearing it's ugly head: it sure looks that way to me.

However for others who have real questions: please feel free to ask me. If I can be of help to answer them, I certainly will. If I do not know the answer, I will find a place for you to get the answers you need. I unlike some people I've seen posting after my post and the comments I've seen - DON'T know everything, but do have a level of expertise that can be of benefit for those who need it.

For writers who write about their own disabilities in length: CHEERS to you! That is where most people do get their information and it is highly important that people do write about their experiences whether it be in fiction or non-fictional arenas. This is how many people will get the proper education and information on how those of us with disabilities live in this world, which is often quite inaccessable to most of us. For those like Jenna who have her own experiences through her brother, again, another avenue where people are educated by someone's direct experiences with a disabled person. It is through real life experiences and real life expressions from those with disabilities directly, that all of us can learn more about how each person lives and thrives in this life, despite how we were born, accidents or things that have happened that have given us a different view of the world than those without disabilities.

Re: Joe and your different view of how you look at your foster son: more power to you. I only hope that for his entire life he has someone like you who will always fight with the 'powers that be' who will want him to do 'special' this or that; and will fight for him to have a wonderful, happy, productive life that is happy and successful and gives him and you, reasons to rejoice in the successes that happen every day. Unfortunately there are lots of people in the schools and so forth, who will want to continue to drag him (and others with disabilities) down to what "they" "can" do.

With lack of education or sensitivity in the world there will unfortunately always be people who will look at him and say "he can't", but he will know he can and it's all in the knowing you can because SOMEONE believed in you. "Success" is relative: I have a friend who's daughter is severely disabled and when she reacts to certain things in a cognitive understanding, it is a huge leap and a huge success.

He (your foster son) will do very well and be very productive and happy knowing that he has had your support in knowing he CAN and that disabled does not mean "NOT ABLE"!


For anyone who wants to eat at my writings here and how a dissertation committee wouldn't put up with this or that: I am not speaking to my disseration committee and don't really care what you think about how I write my notes here or if I want to continue withone continuous thought without even a pause or using any form of sentence structure or punctuation. Bottom line is I've written and defended 2 dissertations, many articles, several scripts and my first play was optioned and played Off Broadway fora year. So instead of those of you who are wasting your time blowing smoke criticizing me, perhaps you should do something better with your time.

Bottom line is, I have the credentials and the resume and the experience both personally and professionally to offer suggestions. But as I said: I am not going to put in paragraphs of pieces of information that are opinions on various subjects. Instead, I offered you see the site and if you have questions about specific things you are or want to write about, I'll do my best to help out with. Now, based on some of your reactions, I'm apprehensive about helping anyone. However, I do not want to punish all for the actions of a few, so if there are any writers on the boards that want some information or some assistance that I may be able to give you, I will try to help you as best as I can or direct you to a place where you can hopefully get answers to your questions.

and, I AM a Deaf woman with two Ph.D.'s. I also happen to be Deaf, but I am a DEAF woman and I'm proud of that and when I lost my hearing ove 20 years ago, I became part of the Deaf world and Deaf community: my using sign, and sign language and being a proud Deaf woman is something I don't compromise and I liken it to someone (a friend of mine) who says she is a "Black woman with a PhD", not a woman with a PhD who happens to be black: I look at being a "D" deaf person who is involved in Deaf culture and Deaf rights, something to be proud of. It was not until AFTER I lost my hearing that I went to college and went on to my Ph.D., it was not until AFTER I became Deaf and disabled that I turned alot of things around and did things with my life I probably woudln't have normally attempted. So yes I am proud to say I am a DEAF WOMAN WITH TWO PHD'S.
Don't get 'politically correct' with someone else's culture or views of their own life or how they describe it; that's one thing about including disabilities - you can't speak for us or try to grammatically (or politically) try to improve the way we describe ourselves or anyone else.

Joe Calabrese
04-22-2005, 12:05 AM
I am happy you are here. I'm sure you can give and receive valuable info on these boards, BUT the one thing you forgot to address is how you way over reacted towards me in moving your post.

How about an apology for doing my job, which after all is the reason your posts are getting all the attention they are now.

BTW. I remember you as Amanda in Deadly Manor. Pretty good late 80's horror flick from what I remember. Cool. :banana:

redjennphd
04-22-2005, 12:12 AM
Hey Joe

OK I'm sorry. I am. I clearly overreacted feeling insulted that I guess I came off as saying "pay me for info" which was not my intent. So I do apologize for going off, I guess I just really took it that someoen thought I meant I wouldn't help them out if I wasn't getting paid.

And re: Amanda - OH GOD. Glad you found it to be a fun romp of a typical 80's B flick. It was fun as heck but oy vey. But yeah Amanda from Deadly Manor would be me. Can't believe you saw that. That was a hoot to do, and that one and the other low budget B stuff I did, are pretty popular even now, which surprises me. But at least there is an audience out there for them; they kept me employed for a long time :)
Jennifer

JennaGlatzer
04-22-2005, 12:14 AM
Well, now we're actually having an interesting discussion. :)

I agree with you, Jennifer, that when you're writing about yourself, you have every right to identify yourself however you like. I almost mentioned this point in the above post; when I was agoraphobic, I was fine calling myself an agoraphobic writer, rather than a "writer who has agoraphobia." But if writing about someone else, I would have tried to remember to word it the other way unless I knew the preference. And many publications (especially ones geared toward people with disabilities) will require that, on the basis that regardless of personal preference, it's better for cultural awareness to put the person ahead of the disability.

It's not that I was proud of my agoraphobia and wanted that to be the first thing people read about me, but I just didn't really care about the simpler wording.

On the other hand, my mom, born before the days of "empowering language," still talks about "Down syndrome kids," and I cringe. I just don't see that as the defining characteristic that needs to be mentioned first.

Little language shifts. Little steps forward.

Regarding "disabled/differently abled," etc., some publications have stated preferences. On a personal level, none of them bother me, though I've always wished for a better term that really fits.

"Mentally retarded" has mostly been replaced by "developmentally disabled." "Handicapped" has fallen out of favor.

My favorite philosophy of all is on the Uno Mas website... people with DS have an extra chromosome. That's all that separates them from you. (And as a PS, my mom and sister both have an extra piece of a chromosome, and I probably do, too... what a tiny difference.) Anyway, "Uno Mas" means "one more," and their slogan is "Just a little something extra!" My brother loves that. If he gets to think of himself as having "something extra" instead of something missing, all the better. :)

Joe Calabrese
04-22-2005, 12:22 AM
Apology accepted.

Now let's ALL forget this happened and turn this into a productive thread.

Who knows, maybe someday we can even have a forum specific to writing with and for disabilities.

Peace. :kiss:

Birol
04-22-2005, 12:38 AM
Ah, good, looks like peace was made. And it does look like an interesting discussion shaping up.

jdkiggins
04-22-2005, 12:43 AM
Don't get 'politically correct' with someone else's culture or views of their own life or how they describe it; that's one thing about including disabilities - you can't speak for us or try to grammatically (or politically) try to improve the way we describe ourselves or anyone else.
Jennifer,

You came to a writing site. We as writers try to be grammatically correct.

You may have a lot to offer, however, you still seem to be on such a high defensive horse, maybe it is we who are leery of asking anything. Maybe you need to relax a bit, not take things so personally, and get a little bit thicker skin. Joe was doing his job and you, who seem to be such a easily hurt person, should understand why he should receive an apology for you jumping all over him.

I make jokes about what I call my ďdead zone.Ē Most people here know Iím disabled because of a stroke and other illnesses I have.

One thing Iíve never mentioned here before (so this is news to you and this board) is that since first grade Iíve been 100% deaf in my right ear and 90% deaf in my left. I learned to read lips, and it was six months before my first grade teacher realized I couldnít hear. She found out because my friend, who sat behind me and tapped me on the shoulder if the teacher was talking to me, was absent one day. If Iím not facing the person speaking, I canít hear. Most people who meet me will notice I look directly at them when they speak, but they donít know why.

You see, you said even doctors, lawyers, etc., have disabilities. I know a lawyer who has been deaf since birth. He takes much offense to someone saying heís a deaf lawyer. Heíll come right out and tell you, ďIím a lawyer who happens to be deaf!Ē Then heíll proceed to tell you that his cases do not fall on ďdeafĒ ears regardless of his disability.

So, Jennifer, Iím not trying to improve the way you describe yourself; Iím simply warning you that some people may take offense to the way you may describe them; even others who are as highly educated as you.

Yes, I consider myself to be a person who is deaf, but I am in no way a deaf person. Iíll listen to anything anyone wants to tell me, including you, :) as long as the discussion is kind, considerate, and without yelling. (Use of all caps is yelling on forums, just in case you werenít aware.)

You have a nice day, Jennifer, and please do come back to answer questions to the best of your knowledge and share that knowledge with those who are interested.

Cheers and good luck in all your endeavors.
EDIT: It's obvious some of this post re: apology, was being written while others were already posting. :)
Joanne

jdkiggins
04-22-2005, 12:51 AM
Since this thread has turned into something productive, maybe members who do have disabilities and are willing to list that disability, could place his/her name in this thread. It's a possible way to help others understand ceratain issues and allow others to ask questions for pieces they may be interested in writing.

IWrite
04-22-2005, 01:18 AM
Jennifer -

I have a question for you and please don't be defensive or take it the wrong way because it is something I am truly curious about and don't really understand. I'm posing this question to you because of your earlier posting where you expressed pride in being a Deaf woman.

A couple of years ago I saw a piece on 60 minutes (I think) about cochlear implants. The parents of the child in question (both hearing) were interested in getting implants for their deaf daughter. They interviewed members of the deaf community who were against the parents doing this. I found this odd - and it has stuck with me.

While I can understand being proud of triumphing despite a disability - or not letting a disability limit your life options, I don't understand the idea of being proud of having a disability. You compared your pride to that of an African American woman taking pride in being black. But racial, religious, ethnic or sexual identity are not synonomous with a disability. After all, a disablity by definition is a disadvantage that prevents or restricts. My friend who is blind is not proud to be unable to see - he's resigned to it and has dealt with it and has made a life for himself in spite of it. But if he had the option, he'd choose to see again, rather than deny himself the sight of the beauty around him. Same with the quadraplegic I know who injured his spinal cord in a car accident or my Uncle with MS who can no longer play his beloved golf.

I just don't understand the mindset of those who think it is better to be deaf, if there is chance with the cochlear implant that that child on 60 minutes would be able to hear.

Again, I mean you no disrespect. I just really don't understand.

redjennphd
04-22-2005, 04:02 AM
I think all of this has truly opened up a seriously great forum of discussion. I just got the email notice there was a reply and there were several so I'll try to respond.

To: IWrite: I certainaly didn't take your note as disrespectful in any way, and I'm glad you brought it up because it's things like that which help us learn how others do think of other cultures. Re: me being a proud Deaf woman it is kind of similar to being a proud Black woman or whatever. There are alot of things in Deaf Culture and history to be proud to be part of. Having been only the 4th Deaf woman in the world to get a PhD it's kind of cool to be part of that history. However there are so many things about being a 'proud deaf woman' that I do feel are good, that they outweigh the bad.

Not hearing, losing your hearing - no doubt about it - it sucks. I will not sugarcoat it.. I would take getting my hearing back in a second if I could. If you asked alot of Deaf people (which I have in research) in private, away from other Deaf, "if you could take a pill and become hearing in 5 minutes, would you take the pill", 97% said yes. If asked around other Deaf, they said no. Soooooo, I'm proud to be a , hmm lets see: American Deaf Woman Writer Actress Consultant, whatever.. know what I mean? So taking pride in being disabled or having a disability is just the sense in that, I don't have a choice, so I rather take pride in, especially being Deaf, in being a part of that culture, by happenstance of losing my hearing and by choice of using ASL as my primarily preferred way of communication.

Taking a position of strength, learning as much about my disability (and the Culture that comes with the deaf part) including my spinal disabilities, is something that just educates you to be proud of who you are disabled or not. Because I don't look at my deafness in and of itself as my disability (its a drag and it sucks) but my spinal disability (and the subsequent disabilities from that) are my real disabilities. But my deafness is a drag, a pain, but the reason I don't look at it as a 'disability' in how most people view a 'disability', it's an "in-ability", an inability to hear, but it doesn't disable me. I can still do just about anything else. The Deaf have a saying "The Deaf can do anything but hear". While I find errors in that sentence because does that mean that if you're deaf you can automatically be a mountain climber or play a violin at Julliard? No. SO, if I decide to disect the sentence it's not true, but on the surface, the spirit in which it is meant, is true.

Regarding the Cochlear Implant: I know what show you're talking about. I should clear up that for me personally, I am proud to be a Deaf Woman, but I am NOT a political pioneer nor political follower because other what we Deaf call "deafies" believe. I believe that the cochlear implant, while it is cause for a HUGE debate in the Deaf Community, is something that has to be right for that person. As parents (I'm not one so I can only speak from what I feel as a parent's child), I think parents do and must do, what they feel is right for their children. If a parent thought that a cochlear implant is going to open up the world for that deaf child through opening up communication avenues or educational avenues, then those parents have the right to do what they feel is best for their child. I think if the CI does not end up providing enough enhancement for their child, they can always add sign language or whatnot to the child's repretoir.

I'm also a proponent of sign language for deaf children. It's proven in research that all children can benefit from learning sign language as they will have control over their motor skills to express themselves before they will have developed linguistically in speech. So it can't hurt. If a child is born profoundly deaf, their chance of benefitting from ONLY doing lipreading can be developmentally disabling in that these children will be attempting to learn a way of communication that is not speech. Reading lips is not a language. A deaf child would have to learn a language and how to read it on lips that is extremely difficult, even after years of training, at a young age, thus missing out on the developmental years of education and other important developmental issues they would be able to experience having had language development from an earlier age.

An example: the ex Miss America Heather Whitestone, said that it took a number of years (I won't quote her because I can't remember the exact words) to learn how to say her name, something like until she was 5 or something. All those years spent trying to teach her to say her name instead of those years spent actually developing language, cognitive development and so forth. Now for the record, lipreading, speechreading (there are so many words to use) seem to have benefitted Ms Whitestone and she is happy with how it has worked for her.

I am of the school of: " whatever works for you". Therefore I feel that none of the aspects of CI, speechreading, lipreading, total communication (signing and speaking at the same time), American Sign Language (which is not English in sign but its' own language) or other forms of communication that can be used for a deaf child, should be negated. I do feel personally and from the research I've done extensively, that sign language is proven to be the most beneficial mode of communication for a deaf child because it creates an immediate form of communicative gratification for a child to express themselves. However, I don't negate any form of communication or wearing hearing aids or getting cochlear implants.

I liken it to the equivalent of: at 4 I was told I needed to wear glasses and I was legally blind without them - if my parents had said "oh no we don't want her to have the stigma of wearing glasses her whole life" - where would I be? Of course they got me glasses and I'm fine, and I'm thankful they did. If I'd been born deaf and they decided to get me a CI, I, as an adult could then choose to learn sign or not. This in fact happened: I was told 2 years ago that I was finally a candidate for a CI, which I had not been prior due to the technology. I chose to sit with my parents (at 43), the people who, if I was a child would have looked at my best interests in this decision. They didn't think it was a good idea and brought up many of the concerns I had myself: years of re-training myself to learning sounds that would then sound metallic and not as normal or as I remembered them, actual years of relearing hearing and speech, when I work on my speech all the time so I don't lose it, I didn't want to be in an office about 2-3x a week at 41 years old relearning everything. So, we decided it was not for me, I'm cool with things the way they are. But I did not decide NOT to do it for Deaf Culture reasons; I did not do it for my own reasons. if perhaps technology advances to the point where I don't need to have a magnetic thing put behind my ear, and a wire into a pocket transformer and then I could actually hear things the way I remember them - well then we'll rediscuss the issue. But right now, I don't think I would actually benefit from it. Young children however, I think WHATEVER extra benefits you can give them to help them to survive in this world is what you should give them. Then they can, as adults, decide what they want to do: take off the transformer and learn to sign - or continue to utilize the technology they've got. I'm for whatever works and for the fact that the Deaf community should not and does not have the right to force or to tell parents what THEY do for THEIR child is wrong - whatever that decision is.

I think that each parent must make those decisions in the best interests of their child - just get educated on all the options. But especially because deafness is not only a 'disability', but its a Culture, you will find that the cultural arguments of some Deaf arguing that CI is "killing our culture" and the other political arguments that happen for fear of "cultural genocide", is something that can't be avoided. However, there will always be deaf people, and there will always be divided camps on the discussions of communication for the deaf.

I'll finish this discussion on the CI subject and move on with a new entry so as to keep it in a string that would not be me dragging on and on with a million subjects in one box.

IWrite: thanks for the questions, and for asking them. I appreciate it and you did it no way disrespect me and I don't think you meant any disrespect. So for anyone with questions, ask them - I'd be happy to answer them as I said, but I'd rather answer them than not and give my point of view on them, than have you feel like you might hurt my feelings or disrespect me.. I don't think anyone who is asking justifiably curious questions is in any way being or meaning to be disrespectful or mean. :Hug2:

redjennphd
04-22-2005, 04:21 AM
Hi JD:

I think your post about those of us with disabilities coming out and speaking about them being beneficial to all, is a great one. I totally agree. I think in how the post has come around here, that it has truly become educational for us all and if other members don't have a problem discussing their disabilities to help us all understand each other, what we're writing, and a subject which is so often run away from, it would be a great addition and spot for folks to come and get some first hand knowledge of different disabilities and how our lives are led.

I also wanted to note, that I did aplogize to Joe, sincerely. I did see where I became defensive and stepped back and saw the error of my ways and how I was feeling about it, and apologized to him for how I overreacted.
Regarding grammar: my grammar stinks sometimes. My comment was about someone elses comment on how I wrote and basically I took it as how would I pass a dissertation panel with my grammar. I write in this type of forum, as fast as I'm thinking and I'm not always thinking grammatically correct. I think in that quote I also meant that just for what it was: if a person of a certain disability is discussing that disability (I have been and was questioned often in school and at my dissertation defense, in the gramatically incorrect use of capitalizing the "D" in deaf. I explained it and they got to learn something new) That's all. I know when I write it's not always gramatically correct, mispellings happen because I'm typing fast. I understand everyone here is a writer but I think in discussions that are not technically about the writing but something else, we can use a little leeway in terms of grammar and spelling. No biggie

I also COMPLETELY agree with you in that each person describes themselves in their own way. There are people as you mentioned who don't want to be the "Deaf lawyer" or the "Deaf doctor" but the "...." that "happens to be deaf". I think as you say, it's all in terms of each person's own perspective as well as how they think others will look at them. Even a Deaf Culture Deaf Lawyer may, at times, describe themself as a lawyer who happens to be deaf, due to the way they want, (or don't want) to be viewed by others who don't necessarily want to look at it as a negative but as something this particular person has chosen to work around and become whatever they wanted despite it. So I understand what your'e saying. I only meant from my perspective, which is why I do preface things by saying its my perspective and in my perspective (most of the time), I'm a proud Deaf woman. But in others, I'm also an actress who happens to be Deaf. I can say that because, simply put, I can still speak well, and I do play hearing and deaf roles. There are Deaf actresses who I know who are and proud to say they are simply put "Deaf actresses". It's all in each individuals perception or again, in how they want to be perceived by others.

i was writing in response to your piece as I was reading it and also got to the end where you noticed I had posted an apology to Joe

So I appreciate your input and I didn't mean an intent of yelling in caps, I was using it as emphasis not as yelling. Sorry if anyone took offense thinking it was a yelling. I was not aware that all capitals was considered yelling online but I use it simply as where I am thinking in my head as I'm writing, of where the emphasis on what I want to say is meant. Thanks for the info

:PartySmil thanks for your patience (all of you) and in allowing me to learn as I go here with your help. Let's get this party started. Rock on ya'all.

JenNipps
04-22-2005, 06:36 AM
To go sort of along with what Jenna has said, I'd also recommend that anyone interested send for a sample issue of Careers & the disAbled. You'll see some very interesting articles, all written people-first with the disability (personally, I hate that word, but that's probably just me) second.

JenNipps
04-22-2005, 06:38 AM
Not with the intention of hijacking this thread, but I'd be interested in knowing how the disabled view the phrase "differently abled," of which our school district is quite fond.

Maryn,

Being legally blind (another phrase I don't like, but don't have much choice in the matter), I actually prefer seeing "differently abled" than handicapped, disabled, impaired, etc.

mdin
04-22-2005, 07:40 AM
<peeks in>

Just want to say many of the people posting in this thread might be interested in this (http://absolutewrite.com/forums/showthread.php?t=11085) other thread.

mdin
04-22-2005, 07:43 AM
btw, I haven't seen Deadly Manor, but I have seen FrankenHooker! I used to even have a poster in my dorm room.

JennaGlatzer
04-22-2005, 10:14 AM
Hey, thanks, Nav!

Jennifer, glad you weren't just advertising. :)

I think I will move this to the Story Research board after all...

JennaGlatzer
04-22-2005, 10:28 AM
P.S. This fascinates me:


If you asked alot of Deaf people (which I have in research) in private, away from other Deaf, "if you could take a pill and become hearing in 5 minutes, would you take the pill", 97% said yes. If asked around other Deaf, they said no.

A while back, I did some reading on the Cochlear implant for the same curious reasons IWrite mentioned. I didn't understand why anyone would "protest" a parent's right to do that for his/her child.

I came to understand it, even if I didn't agree with it.

When hearing parents refuse to learn sign language for a child who's deaf, that's insulting to some members of the deaf community.

Some of them say (at least outwardly) that they don't feel deafness is a disability, but a culture-- and just like French, Italian, etc. are languages, sign language is theirs. So for some, they see hearing parents who go for the implant for the child as ignorant of their culture, and saying that there's something wrong with being deaf. That the child wasn't "good enough" as is. That it was too much of an inconvenience for the parents to bother learning how to communicate through sign language, so they make the kid "fit in" instead.

I wondered, though, if that was rationalization talking-- that the deaf adults who say those things are really just saying that they feel insulted by the insinuation that there's something "wrong" with them.

But why anyone would choose to deprive themselves of a sense they could regain just out of "peer pressure" feels weird to me. Like Jennifer says, there are plenty of other valid reasons not to do it, but I don't feel right about those who shun parents for wanting their kids to have a chance to hear and have fewer limitations.

This is an issue I'd love to see more about. We have several deaf writers around here... if you feel like weighing in, I'd love to hear it!

Chacounne
04-22-2005, 11:40 AM
I'm not deaf, but I do use hearing aids, because I have been losing my hearing for the last fifteen years, finally getting the aids about five years ago. The aids have changed my life, making it possible for me to participate in conversations again. There are however downsides to using aids; aids magnify all sound, not just the sound you want to hear, so being in a noisy environment is very difficult because you feel (or at least I do) overwhelmed, and holding conversations in that arena is just about impossible. I try to be very proactive about telling people that I use aids and that they have to talk one a time around me, but it isn't easy. Then there is the whole area of getting people to slow down and enunciate clearly when they talk. These effects make it pretty much impossible to get a job in a public place, and cut off other major possibilities for employment. I also have huge problems on the phone, because people aren't used to having to speak well, so I miss whole sentences, because they speak too quickly, or slur or mumble their words, sigh! Even people who know me well get irritated when I ask them to repeat what they have said. It has very much led to isolation.

Just some food for thought,
if your considering including a character who is hard of hearing,
Chacounne

redjennphd
04-22-2005, 12:41 PM
Hi all.

Well there are getting to be some really great discussions going on here.

First to Navigator: You had the poster on your wall. That's very cool. That was a really truly fun movie to make and it's gained a bit of cult status which is kind of fun. But it was a classic and the director Frank Henennlotter is working on another film now so hopefully it will be another fun, cheesey Frankenhooker type deal - he does them so well.

To: Chacounne - nice to meet you. About the darn hearing aids - boy can I hear ya sister (sorry couldn't avoid the obvious pun). they stink. THey make EVERYTHING louder so I only hear the loudest thing, and they really aren't very helpful except in a quite room one on one but they are certainly a drag and they take alot of getting used to. Took me a long time to get adjusted to wearing mine too. But at least they do give us a bit of something we lost so I'll take em. You may wanna try an assistive listening device like the PocketPro (if you need a www address for places that sell them let me know): when you wear them with hearing aids, they help ALOT and weed out the excess noise and bring what you want to hear closer because it has a mike on it - I use mine alot (well did, it died so I need another one) but it makes using the hearing aids better. I think your comments about the cons of the hearing aid thing is a great addition. I had to work with a character in a film who was a boy who became deaf and I made sure this kid was fit with molds and used an old pair of my hearing aids and I had to watch every tiny bit of movements he made to make sure the reactions were realistic to the hearing aid reality. They do have their benefits as you mentioned but I have found that I have to tell people often and repeatedly to slow down and speak slowly and clearly and to look at me while talking, and they still talk fast, or look away etc.. When you're hearing is impaired or lost especially later in life but perhaps earlier than it would happen due to age - we get lost in teh shuffle. We speak well so people make the assumption we can hear as well as we speak and it's a hard sell to get them on board to understanding it. I also had one guy who exaggerated his mouth so much it made me crazy. I ran into him with his friend in a market once and he spoke like a cartoon character saying "she's deaf you have to talk like THiiiiiiiissssss" and I had to tell him no. And people also don't realize that yelling does not solve the problem, it makes it worse because the sound gets distorted so... Just slower paced speaking clearly, and boy aren't accents a stinker - when someone has an accent reading their lips is really hard.


Jenna, I'm gonna respond to yours in a separate posting. It was really well written and made some great points that I'd like to comment on but I'll have to put it in my post and respond to pieces of it so I can keep my train of thought on your writings and not lose my place. :)
jennifer

Humourwriter
04-22-2005, 12:58 PM
There's a quote from Helen Keller (I think) that goes something like this: "Blindness cuts you off from things. Deafness cuts you off from people".

My father is hearing impaired, and so was my mother. (Dad could only hear the low notes, and my mother the high notes, so it was a constant battle over what the 'tone' was set to on the stereo.) While I don't have a hearing problem myself (although it can be extremely selective at times), I know from my parents just how frustrating it can be not to be able to hear, to jump into a conversation they've mis-heard and say the wrong, and have people think they're stupid when they're anything but.

I also studied Auslan (the Australian deaf sign language) for a couple of years, and learned a lot about the deaf culture from the people I met over the years of study. And it's hear that I appreciated how important it is for kids to learn how to communicate with language, be it signing or otherwise. Some deaf adults had only rudimentary language skills (they had a lot of trouble signing), while others could communicate very well in both sign and 'English' (they could fingerspell just about any word in the English language). And Cochlear implants were definitely frowned upon by most 'deafies'.

I'm not sure if I can help anyone with this information -- it's been years since I signed, and my Dad has hearing aids now (which he absolutely loves). But if anyone wants to bounce an idea off me, feel free.

Bill.

redjennphd
04-22-2005, 01:57 PM
P.S. This fascinates me:
This is Jenna's letter: I'm writing within it so as to keep my train of thought. It's almost 5am but I couldn't sleep and I don't want to lose my train of thought in chiming in on your post. Thanks for the patience :)

Quote:
If you asked alot of Deaf people (which I have in research) in private, away from other Deaf, "if you could take a pill and become hearing in 5 minutes, would you take the pill", 97% said yes. If asked around other Deaf, they said no.
A while back, I did some reading on the Cochlear implant for the same curious reasons IWrite mentioned. I didn't understand why anyone would "protest" a parent's right to do that for his/her child.

I came to understand it, even if I didn't agree with it. .It is indeed hard to understand, why someone would protest what someone else chooses is right for their own child or why they wouldn't agree that in the best interests of the child something that could assist them in their life would be looked at as sooo horrible. But in the Deaf commmunity the true political Deaf within the community and Culture, continue to call it "cultural genocide". I am often in debate within my own community on the issue but there are very strong stances on it. I understand their passion about it but I don't understand or agree with HOW they approach it. GIving information on ASL and other avenues to parents of a deaf child is great, but there are many Deaf who really go at it with a vengence which I find to be overkill and an assumption that #1 living a 'deaf' life is such a great thing (being deaf is not a great thing: accepting it and embracing it and the culture is, the actual loss of the sense surely cannot be looked at as good. However people have said to me first hand, that they feel that when a deaf child is born, it becomes "theirs": meaning part of the Deaf Community and Deaf Culture and therefore they have the right and the responsibility to force their beliefs on the CI onto the parents. When parents find out their child is deaf, they go through many stages of disbelief, grief of the hearing child they thought they had and so forth. I'm sure many parents who have a baby and find out it has some sort of disability go through the same thing

When hearing parents refuse to learn sign language for a child who's deaf, that's insulting to some members of the deaf community.

I'ts not insulting to some members: it's considered insulting to most (I can't say all because I can't speak for every member clearly) but in the Deaf Community a parent who does not learn sign for their children is committing what we call "communication abuse" by not learning how to communicate with their child. That's how it's viewed. These parents are the norm not the exception unfortunately, but it is viewed as a horror, which is why so many Deaf in the community feel the need to kind of put themselves into these children's lives and try to show them the beauty of being deaf and so forth. However; on a cultural and historical note: even dating back to the early 80's (and even a while after in some places) deaf kids were hit on the hands or had their hands tied together in oral schools to force them to not use sign language.

In the oral education tradition, namely one example the Bell school (there are still a couple others in existence) which still exists in LA and is still just as strict and taking an equally as unmovable argument for the other side of not using sign language at ALL. I can say this without worry of any kind of fear of slander or libel because I've seen the brochures for the place where my friend was sent as a child. This woma n by the way, upon reaching Gallaudet University: the only university (for an undergraduate degree) for the Deaf in the world, and where here are strict rules on the degree of hearing loss, all classes are taught in ASL only, with no interpretation of any sort. Students who do not know sign, spend a year (it was a year of 'prep' back in my friends day anyway) learning sign so that they can then enter their first year of education and be able to understand the teachers.)

At any rate, parents were (and are) told to not even use GESTURES of any kind so as to not encourage sign language because the school of thought was (and is in many cases to this day) was 'freaky' and thought of as not a form of communication and most of all looked at as severely limiting the deaf child's opportunities for a 'normal' life. But these kids who were in oral education (Lexington School in NYC was an oral school back a while and there are still oral-only schools around), the kids still signed when not in class and signed to each other and are mostly (not all) all using sign language and in the Deaf Community and Cutlure as adults.
I also agree with you on this one: while I am still of the school of thoght of "whatever works for you", and a parent having the right to decide what they think is best for their child, this is a touchy subject with most Deaf in the Deaf community. However as strongly as I feel about 'whatever works', having a deaf child and assuming that deaf child will not at some point (which has been found in lots of research) find themselves even more diffferent using oralism and find a sense of self and a sense of belonging with their deaf peers who sign is very likely to happen once the child is in any way exposed to others 'like them'.

I think that if there is profound deafness, with no hope of residual hearing that would be helped by assistive devices thus making the oral communication method nearly impossible, the parents that don't learn sign to be able to communicate with their child, do risk a great loss: the loss of the love of the child and the loss of the relationship they can have with this child. This was a large part of my dissertation and was/is a subject of many of my writings or lectures.

Signing, even if a child would eventually use a CI or hearing aids or whatever else, learning sign, at the same time as your child only opens up the lines of communication and opens up the relationship greatly so that when the parent wants the child to have the Ci or whatever else, there can be an understanding and interaction in communication. If it's not going to be the 'preferred method of communication" by parent or child, it stlil is an added language and gives the child options as they grow up, to open their own world to being part of the Deaf AND hearing communities.

I personally know TOO many deaf adults who have no relationshps with their families because they have no communication. They said their childhoods were filled with only simple words here and there "school", "bed", "eat", extremely minimal and when their parents were talking to them or yelliing about perhaps leaving thier bike in the yard: all this adult saw as a child , without undersanding the words, assumed from the facial expressions, that their parents were always mad at them and they didn't know why.

In actuality and in alot of reasearch done, it has been found that less than 1% of parents of deaf children learn ANY sign language at all, even minimal. They are missing out on the relationships with their children and their lives. Where other children who are hearing or who are perhaps children of deaf parents or people who learned sign, get to discuss their day at dinner or their feelings etc., these children to not, and don't get to do it as adults.

There is a woman I know who's mother was dying and she went to the hospital to see her: the mother never learned ONE sign and yet sent her daughter (who doesn't wear or benefit from hearing aids) to a deaf residential school and the daughter and mother were not given the opportunity to have their last good bye, or anything. I was heartbroken hearing this from her. Her reaction? She said she didn't feel like she was losing her mother because they never had a conversation or a talk or anything she related to a mother-daughter relationship. They never made that bond because they never had any real communication. I found that to be really sad.

I feel that, as hard as it is, learn it and communicate from the time it's diagnosed and then at least there is some communication and you can STILL put in oral communication methods or hearing aids or decide on a CI but you will have very early dhildhood communication. As I'd mentioned before there are hearing parents who taech their hearing children sign (Debra Messing does this with her baby) because it gives them communication, language for expression and interaction before their hearing child will be able to verbalize their oral communication. It's just an extra bonus and if anything else, the deaf child will have had the benefit of having it even if they choose to be oralists who dont' interact or partake in the actual Deaf Community. I did find that the many parents that don't or won't sign for their children, just feel that it is truly a crippling thing that their children will be looked at as freaks using sign language (their words not mine) and that using sign would alienate them even more than just being deaf and that the parents are trying anything they can to really in essence and actions, still denying the hearing loss in their child and think the oral methods or other things available will make their child not deaf. Even those who have a CI: the child is still deaf; they've just gotten a useful form of technology that can open their worlds up a abit more to the mainstream.

Some of them say (at least outwardly) that they don't feel deafness is a disability, but a culture-- and just like French, Italian, etc. are languages, sign language is theirs..And it is the 3rd most used language in the country and is truly a language: not just gestures or things made up visually as many people stlil believe; but with it's own syntax, grammar and everything that goes along with any other language: it's just done visually and your facial expressions are equivalent to your vocal inflections.
So for some, they see hearing parents who go for the implant for the child as ignorant of their culture, and saying that there's something wrong with being deaf. That the child wasn't "good enough" as is. That it was too much of an inconvenience for the parents to bother learning how to communicate through sign language, so they make the kid "fit in" instead.
.Exactly. That is the view of both: the parents, and the strong advocates of using pure ASL. It is an inconvenience and having to immediately start learning a whole new language because your child is deaf (many parents put this off for a long time if they do it at all also because they are still in hopes that something else will change the diagnosis of the child in a sense: not the medical diagnosis but the societal one). The way you worded that paragraph is exactly how it is looked at and it is a war that will go on forever between ardent ASL-only "the deaf child is ours" advocates and parents of deaf children forever.

I wondered, though, if that was rationalization talking-- that the deaf adults who say those things are really just saying that they feel insulted by the insinuation that there's something "wrong" with them.
.Again, not speaking for all, I think Deaf culture/Deaf Community members don't even like being categorized as disabled. My argument to my friends was that the ADA law was written and includes a great deal about the laws regarding the deaf and if you're going to take advantage of using the ADA law to create lawsuits regarding interperters and no way to order through a drive in window (actually happened), then you must accept the label, at least to the outside world and the world in general which is, let's face it: a hearing world, you need to compromise too. All hearing people can't be expected to learn your language, you need to compromise and educate them on how to work or deal in social or work situations (even restaurants and so forth) with HOW to work with you; not make it a constant soap box. THen people will see the need for early communication methods using sign for a deaf child and won't immediately feel attacked . If you are going to use the ADA law and demand interpreters and the things that go along with the law or sue people, then you have to, at some point, for at least those reasons, admit that your deafness is a disability or at the very least disabling or then don't call on the ADA every chance you get, to sue someone for not having access for your particular issue: deafness. I have seen this happen aot in the Deaf Community. Like any community and culture, we have our own group of severe soapbox fighters and also our people who have taken it upon themselves to make it their mission to get every deaf child to use ASL and not be integrated into the hearing world. I myself find this a bit too far gone because as I said, we live in a hearing world. We might exist within a Deaf Community with our own cultural events and things like that which revolve around using sign language; but closng out the hearing world, just is not realistic. These are my opinions on it based on my many conversations, interactions and regular interaction within the Deaf Community.

But why anyone would choose to deprive themselves of a sense they could regain just out of "peer pressure" feels weird to me. Like Jennifer says, there are plenty of other valid reasons not to do it, but I don't feel right about those who shun parents for wanting their kids to have a chance to hear and have fewer limitations.
.Cheers :Clap: I just wish that this attitude was one take by the people who do make it their business to try to take 'ownership' of sorts, of a deaf child. I think that anything that can be given to any child born with a disabilty of any kind that would make their life easier and give them more opportunites is a good thing to try. They might not all work, but give them a try; it only gives the child more to utilize in this world. I am in the Deaf Community and the Deaf Cutlure and those on that strong side of the argument against parents rights to decide for their child what's right for them, makes me cringe. But there are ALOT of Deaf who feel the way we do, the group of fighters is much smaller. Unfortunately they fight hard and persistently to try to make their point the one people will listen to. Using lost of intimidation tactics and so forth - goes way above and beyond what is their business and it's not right for them to do it, but as I said, they will fight it tooth and nail.
This is an issue I'd love to see more about. We have several deaf writers around here... if you feel like weighing in, I'd love to hear it!
"Hear Hear" :ROFL: (sorry couldn't resist). But yes, getting opinions and hearing from other points of view on this subject would be geat and would lend itself to more discussion.
However one point I'd like to make: many born deaf, ASL using persons do not write as much as non deaf persons do. This is because English is not considered their first language and when they do write it's in a broken Enlgish much like a immigrant who lacks English speaking and writing skills. Many write the way they picture the words in ASL which seems, translated to the page where, in movement in ASL it would make perfect sense, is very hard to understand for alot who don't have the English skills needed to follow careers in writing. This is why you don't find too many born deaf -ASL first language users writing the stories to be told in film and so forth and why I had posted in the first place: so that deafness (and of course other disabilities) would be included where the Deaf don't have their own 'voice' to tell the stories to include that part of our population that is so under-represented in the media. Just a little factoid to consider. We would probably find more people who are late-deafened, post lingually deafened or hard of hearing writing than the other.
(we might however get some posts from some hearing people out there, some of whom I've dealt with before, who feel it is their duty to speak on behalf of and defend the Deaf and their use of ASL and so forth. so do be prepared for some controversy if that occurs. (Only a fair warning as I've experienced it beign deaf myself when writing articles or doing films where there was a hearing actress cast in a deaf role. It was justifiable because the character was not born deaf and therefore could have been played by a hearing actress based on the needs of the character and the script: but until they saw the film, boy did I get hell and had to spend a great deal of time defending it to a few hearing people who felt it was their duty to protect the Deaf and feel they should speak out on an issue they do not experience first hand and think they are offering 'help' in speaking up for the Deaf. I don't feel they should have the right to do that not being a recipient of the knowledge by first hand experience, and it is looked upon by most deaf as "we don't want your help or your voice" but it does pop up, so just letting you know :)
Have a good one guys. WIll try to check in as often as I can. If not have a great weekend to all (and to all a good night) - OY, now I'm quoting from a Christmas poem - now I know I'm tired and ready for bed.
Nighty night all : :sleepy:

redjennphd
04-22-2005, 02:07 PM
Hi Bill and welcome

Yours is a great and unique view that I know would also benefit everyone on the board: a CODA (Child of Deaf Adults). You can give a different insight into the subject and what you said was so true to the line of communication we have here. You lived it learning the sign at an early age and seeing how a child deals with having deaf parents which is a great insight to this subject. Hope you will come back and visit and post often.


PS just a note to JenNipps: you make a very valid point and show that the wording is all subjective to each individual's point of fiew on their disability and how they want it worded. There are many wrong ways to use words when describing persons with disabilities, but the ones that matter are how each person feels about the 'lables' created. You happen to like and accept certain phrases that many would not, and I'm sure there are others, including myself who arent' comfortable with others.

For the writers scratching their head thinking: well how the heck do I write something without offending? The answer is - you can't. You can't please all of the people all of the time. When all else fails ask an expert or ask several people with whatever disability you're writing about for their opinions on your wording. If in the rest of your script, book, story, whatever, you can justify the use of whatever term you use that may be insulting to some but not to others, go ahead with it; otherwise, just check with a few people get some opinions and views and go for it.

Good Luck, I'm outta here for now - FINALLY :gone:

Humourwriter
04-22-2005, 02:41 PM
Hi Bill and welcome

Yours is a great and unique view that I know would also benefit everyone on the board: a CODA (Child of Deaf Adults). You can give a different insight into the subject and what you said was so true to the line of communication we have here. You lived it learning the sign at an early age and seeing how a child deals with having deaf parents which is a great insight to this subject. Hope you will come back and visit and post often.


Actually, my parents weren't deaf, only hearing impaired. We spoke to each other rather than signed. It was only when I was in uni that I took up sign language. (I tried chatting up a girl, who turned out to be deaf. I couldn't believe two people could be sitting next to each other and be unable to communicate. So I decided to learn the language. )

As part of my studies, we went away on signing weekends, where from 7pm on Fridat night to 1pm on Sunday afternoon you weren't allowed to speak, only sign. That's where I got to know how it feels to have everyone talking around you and not being able to understand a word they're saying.

I don't think a hearing person can truly understand deafness because they can't really experience it. If you shut your eyes, you're effectively blind. But you can't really experience deafness unless you want to destroy your own eardrums. You can use earplugs, of clamp your hands over your ears, but you still hear sound (albeit muffled). About the closest you can get is sticking your head underwater.

Bill.

Mac H.
04-22-2005, 03:24 PM
The idea that Cochlear Implants are equivalent to 'cultural genocide' seems quite insulting to thousands of people who have survived actual genocide.

Cultures die all the time. The culture that my father grew up in no longer exists. The Geisha culture no longer exists. The Ham Radio culture is rapidly dying. The culture of the travelling stock-man is slowly dying out.

Even the culture that we partly share will be gone in a century or two. Why are people exorcising friends from their community just because they feel that their friend's choices are leading to 'cultural genocide'?

I have a slightly biased view point, of course. I'm an engineer who works my butt off to try and improve the world. I don't mind if people decide not to use technology - but those people who put us in the same category as Hitler simply because technology has the side effect of changing cultural groups around is, quite frankly, rather insulting.

I'm involved only slightly with Cochlear Implants (I have one in my hand now, but I've never designed one) so I'm getting miffed on behalf of my profession, rather than as a personal affront. And don't get me started on religious groups who insist that heaven/the perfect New Earth will not have any technology !

---

And on another front, I quite like political correctness (not that I'll ever admit it in public) but I've never figured out a simple alternative name for a 'disabled parking space'. According to the ID card on my car, it isn't 'disabled parking' but part of the 'mobility parking scheme' !


Mac

jdkiggins
04-22-2005, 11:15 PM
Jennifer, Jenna, and all,

I'm happy we're all on a better track here. And thank you Jennifer to responding to everyone.

Now, letís get on to baring our souls. (Iíll use the word "subjects," because even though Iím considered disabled, I donít like the term. In fact, I donít like many of the terms used whether accepted or not. Why canít people just be people? :))

Since this thread has opened an opportunity to help others understand, and allow others to ask questions about various ďsubjects,Ē I suppose I'll have the courage to be the first to list those ďsubjectsĒ of which I'm all too familiar. :)

I know there are many others here who may be of assistance in this forum and hope by me ďletting it all hang out,Ē others will join in.

Please remember, though I may deal with these things daily, I'm not an expert on any of this. I can offer insight as to how they affect me and my daily living along with how I "ignore" them whenever possible. :D I'll be more than happy to answer questions for anyone who is truly interested, whether it be just for the his/her own knowledge, curiosity, or for article information. Iíll list only the ďsubjects,Ē and be happy to answer specific questions as they may come.

Iím not sure what might be the best way of baring oneís soul, but hereís a shot at it.

This is a ďshortĒ list. Believe me, you donít want to know the rest.

Joanneóageó52 1/2

Disorders, diseases, disabilities, handicaps, impairments, whatever anyone wants to name them, which are part of my everyday life: Stroke, Fibromyalgia, Rheumatoid Arthritis, Osteoarthritis & Osteoporosis, nearly totally deaf, PVD (Posterior Vitreous Detachment), Titanium plate cervical disc implant, and Cancer. (All these wonderful things wrapped up in a 4í9Ē body.) :) Edit: I totally forgot (I told you I ignore this stuff) MS (Multiple Sclerosis,) which just recently stuck its nose out from remission.

Other subjects of knowledge due to dealing with them either in the past or currently with others: Diabetes, Dementia, and Alzheimerís.

Up front as far as the hearing, I did enjoy total hearing early in life. Iíve been totally deaf in one ear since age seven. The other ear has gotten progressively worse over the years; from 50% deaf to 90%. As I stated before, I did learn to read lips at a young age, and still do read lips. Iíve never learned sign language and I donít use a hearing aid. I never could stand for someone to put his/her hands over my ears. This playful action blocked what hearing I did have, and as a child it freaked me out. Hearing aids tend to block out the already muffled tones I can hear. Even with reading lips, the word ask sometimes appears as a$$. That has made some pretty hilarious conversations. :)

OK. Now you all know pretty much what my doctor knows, and believe me, this was more difficult for me than you might think, some of these subjects, I seldom discuss with anyone, so if I can be of help, ask away.

And Iíll make my plea again. Please, others join in. Donít leave me here standing naked all alone. :D

Joanne~who has persevered.

Joe Calabrese
04-22-2005, 11:42 PM
Although I have some minor back and heart problems, I wouldn't classify myself as disabled by anyone's definition of the word. I will, however, share my foster son's situation.

When Denny was 3 months old, he was hospitalized for severe brain hemorrhaging and was in a partial coma, apparently from Shaken Baby Syndrome. His brother Ducky, now almost 3 years old, was taken from the home and placed with my familyó Wife Karen and our 4 year old daughter, Eva. Incidentally, our adopted daughter is from Vietnam and both Ducky and Denny are from Vietnamese parents, which is why DYFS asked us to take care of them since we have a cultural commonality.

After 6 months in intensive care, Denny came home to us as well. Since then he has been seeing almost daily, a physical, occupational and feeding therapist. He sees doctors almost every other week and will for a long time to come. Because of the non-accidental brain injury, he is completely blind, partially deaf, has epilepsy which is still not under control, has cerebral palsy, partially paralyzed on the left side of his body. Developmentally, he is still like a six month old, unable to sit by himself, unable to crawl, just learning to eat baby food. His prognosis is that he will never walk , possibly never talk and will mentally be a toddler for his entire life.

Donít get me wrong, he is a lovable baby. He cries, laughs, loves music and to have his hands clapped. He plays with tactile toys and loves bananas and apple sauce more than peas or sweet potatoes. Iíll put up a picture soon and youíll agree heís the cutest thing in the world.

His brother Ducky is fine. Heís a typical toddler and a real pain sometimes. Especially when my daughter grabs one of his toys.

My wife and I love him and his brother and we hope that the courts will terminate parental rights and allow us to adopt them both. We'll know within the next month or so.

I stay at home with them and write during naps. It's a full time job being with all three kids, more so with Denny challenges. I wouldn't have it any other way.

So, I can safely say that I have a lot of experience and knowledge about Shaken Baby Syndrom, Epilepsy and the foster care system for those who want to know.

Oh. Here's a picture of my little butterball. See. He's Happy.

JennaGlatzer
04-22-2005, 11:50 PM
:Hug2:, Joanne.

I don't have any physical disabilities. But I've had the great pleasure of experiencing half the mental illnesses in the DSM-IV. ;)

Over the years, I've been diagnosed with: panic disorder with agoraphobia, post-traumatic stress disorder with delayed onset, (mild) obsessive-compulsive disorder, clinical depression, emetophobia... I'm sure there are others I'm forgetting. I also have a good understanding of social anxiety disorder, though that's not what I had.

Be glad to answer questions on any of those topics for anyone who's interested.

JennaGlatzer
04-22-2005, 11:55 PM
Um, Joe? You're the coolest. I want to be like you when I grow up. Sending prayers that the court case will go your way.

jdkiggins
04-23-2005, 12:09 AM
Joe, he's adorable! Good luck with the courts.

redjennphd
04-23-2005, 01:20 AM
Dear Joe: Your kids are 3 very lucky and blessed people. I can tell from your writings how proud you are of them and how much love you hold for them that your heart could burst from it. I pray that the parental rights are terminated and you get full custody; Denny & Ducky are incredibly blessed to have you who wanted to keep them together at any cost, and your daughter Eva sounds adorable and like she just loves her brothers to death (despite the typical childhood brother-sister stuff, which just goes to show people how 'normal' the lives of children with disabilities are and you're raising your sons and daughter with open minds and eyes that will be the educators and voices of the future of extinguishing the flame of judgment on those who are diffferent from us. It competely rocks. Not easy I'm sure, but the love is soooooo evident in your writing, its a beautiful thing. Truly :Trophy: so here's your "Great Dad award".

I unfortunately could not find the photo, can you lead me to where it is? is it in your profile? it didn't come up on my screen so maybe I did something wrong in thinking it was in this thread - or maybe I just didn't let things load up fast enough (I'm a dinosaur with a dial up modem - still !)


Your personal experiences on this subject can be and will be incredibly insightful and useful to anyone who is writing or wants to learn more about this. I konw I would come to you in a minute when and if I'm faced with questions about these particular issues I'm not as familiar with as you, since you live it first hand.

If the courts don't grant you custody and the parental rights are not severed so you can have your children for the rest of their days, there is truly something VERY wrong in this world. I know being on the American Board of Disability Analysts and so forth, I have done some work in courts or mediation meetings for (mostly deaf) but for all sorts of issues such as this to explain from an 'expert' point of view (of course not as a parent but someone with a degree in Psychogy with a focus on deafness & disabilities: I'd be happy to help in anyway I can if needed or yo would like some of that support in our quest; please don't hesitate to ask. Your profile says you live not too far out of NYC, well thats just a hop skip and a metro train away. So I would be happy (and honored to even meet you and your family) or write something on your behalf and so forth in the 'best interest of the child's" point of view as someone who has done it before. I don't want to jump in or step on yours or anyones toes uninvited nor say what I can do would make a huge difference, but it coultnt hurt and if you would like to talk about it, email me. I mean no disrespect or anything negative about offering this up: I just have seen this in courts many times and well,I just want to say I'm there if you need me. I hope you don't feel like I"m riding a high horse or butting in, its just an honest heartfelt offer. The best interests of the children is clearly with you and the courts need to see and know that period

:Hug2:
jennifer

eldragon
04-23-2005, 03:56 AM
Or, you could ask me. I volunteer at a state nursing home. I don't work for Disney, or ABC. But, I do know people with aids, MS, dementia, alzheimer's, gunshot wounds, bad hearts, burn victims, car accident victims, and the list goes on and on and on.

I also know a blind person and at least one deaf person. It's nice to help people understand the handicaps that other's face everyday by showing them in movies or books. But, if you REALLY want to get to know some ......go to your local nursing home.


But - OP - I'm not saying anything against you at all. You are giving those who have difficulties a chance at having a normal life. Unfortunately, I'm on the other end, trying to help people facing the end of their life, to have a few normal moments.

eldragon
04-23-2005, 04:12 AM
Joe - you are definitely a wonderful person. (So's your wife). Good luck! As soon as those parental rights are terminated .....you will certainly get those kids. There are too many children like your youngest who are waiting for an adoptive parent to come, and chances are, they never will.

Here in Mississippi - pretty much the only children in custody of the state and available for adoption have many of the difficulties you described. None under 6 are even available for adoption, though. I always wonder why the foster parents do not become attached to them, and how that effects the child. (to be raised by someone who has you on an available list for years .....).).

I know the money stops when adoption occurs, but what about love? The only foster parent I ever knew adopted all 4 kids - brothers. So, that's the right thing to do.

As I mentioned in the earlier post, I volunteer at a nursing home. There are some people there who are bed-ridden and in dire shape, from gunshot wounds or fires or ? Their quality of life varies from very little to none. But, there is one lady, Janice ....who was shot in the back of her head by her husband about 4 years ago. She's on a trach...can't talk, eat, drink, walk or do much else. She has very limited use of her arms, no use of her hands. She lays in bed all day - coughing. Last night my daughter and I walked into her room carrying a huge bouquet of balloons and let her pick one (red, of course, most people choose red). She was so happy - her mouth was wide open and she was trying to talk. She had the balloon in one hand - and beat it with her other arm. Back and forth. So, she did enjoy that, its the little things, huh?

JenNipps
04-23-2005, 06:06 AM
If you shut your eyes, you're effectively blind.

Sorry, Bill, I have to disagree with this. While a person may be effectively blind, it's extremely temporary. They don't have to deal with the issues that come up that most sighted people don't think of.

Transportation is a big one, although rather obvious.

When anyone finds out about my eyesight, I can pretty much count on 20-questions starting up. It's hard to explain everything that someone wants to know. It's even harder when they ask, "Well, what can you see?" I know they mean well, but sometimes that's the most frustrating thing of all to me.

My greatest fear is going totally blind. I don't know how/if I could deal with it.

redjennphd
04-24-2005, 12:01 AM
I had a comment to make about what Jen said about the quote of covering your eyes in essence makes you blind - albeit temproarily. Yes doing that can give you an essence of what part of it is like, similarly to sitting in a wheelchair for a few hours, or other things. But you still have the knowing that - you will get out of it. There are a million other things than the just not hearing or not seeing or not walking, etc..

But, I do believe that people should give it a try for a bit to get that one little essence of what it's like. TUrn off the sound on your TV, plug your ears as best you can, put on the captions, don't use the phone: try this for a day. Then watch the TV without the sound and NO captions and see what it's like to try to read lips.

Cover your eyes and go to dinner with a friend, do what I did when doing a scene in my 20's at school for The Miracle Worker: try to travel the subways (OY) with a friend, and spend the day not seeing. Even when I did that, it taught me something, but I knew at the end of the day, I'd have my sight back.

But get in a wheelchair for a day to go to the mall or whatever, and see how inaccessible things are, how people treat you or look at you and get a sense of that loss of an ability.

No you won't get the full experience because there are SO many other things that come with the package, but you will come away with a bit of understanding or at least a newfound respect for what others live with.

I did this with a hearing actress I worked with who had to play a deaf girl. This girl was a star, you know the BMW with the music blasting, cell phone attached at the head and so forth: but she willingly went through 10 WEEKS of my 'torture' of how to live her live every day, and she learned alot and in return gave a brilliant award winning performance for having experienced it. I was really proud of her because changing your life that drastically is a huge thing.
But some of us don't get to change it back. It's still worth a try in seeing how the other half lives; even for a while.

Give it a a try (especially if you're writing about it) and just get a feeling, fleeting as it may be, for the subject and how it affects you.
I wish alot of people in the world who do the judging of everyone, get a chance to do the same.

Jen, I understand what you're saying. I get the same thing: so what CAN you hear? You seemed to understand me can you hear? (no, I just got lucky and caught it) or things like "wow you read lips so well"; yes well I was taught at an early age to lipread, AND I had years of being a hearing person to learn the language and it's rhythms and so forth, which give me a step up in understanding than those born deaf who've never heard the language. I also get, when I say "I'm deaf, can you talk slower please?", the response: "Oh I'm SO sorry", I'm like, you don't have to be sorry -don't feel sorry for me, just talk to me. But no matter the disabilities: all are always faced with the questions, the stares, the pity, the fingerpointing, and so forth. Hopefully with education, understanding and discussion, it can change.

I like how people's individual experiences are being placed here leaving it for a really great open discussion. Rock on!

JennaGlatzer
04-24-2005, 12:09 AM
she willingly went through 10 WEEKS of my 'torture' of how to live her live every day, and she learned alot and in return gave a brilliant award winning performance for having experienced it.

That is so neat! What kinds of things did you have her do?

JenNipps
04-24-2005, 02:38 AM
But get in a wheelchair for a day to go to the mall or whatever, and see how inaccessible things are, how people treat you or look at you and get a sense of that loss of an ability.

When I was in college, students in a vocational rehab counseling class had to do this for an exercise, and then some.

What they did was, they would be assigned a partner, also in the class. One would sit in a wheelchair for a day and the other would be blindfolded. The one in the wheelchair had to tell when and where (exactly) to turn, how to avoid obstacles, etc. The second day, they switched places.

I wasn't in that particular class myself, so I can't tell you how it worked. But I did have a couple friends who said it was "eye-opening."

And sometimes there are days when I would really like to "go back" and be able to see. (Today's one of them. I don't know why, but my eyes are so tired. [So why am I on the computer then??])

ritinrider
04-24-2005, 06:06 AM
Joe good luck with the court system. I know it's a little late in the game to ask, but do your sons have a CASA representative? In NY it may be called something different (CASA=Court Appointed Special Advocate), Basically it's someone who stays involved in your child's case (or children's) until the matter is settled. Social workers change, lawyers may change, but the CASA volunteer remains the same (usually).

On the other note, I have no disablity expertise to offer. I did grow up playing with a cousin who was going, and became, totally blind. I remember some of the things we did as kids, like bike riding. My family used to say, "isn't she the blind cousin? How could you go bike riding?" The answer was long, but the fact was we did go bike riding. She even tried "driving" one day, due to the patience of her father. Thankfully for all of us, once was enough for her.

Nita

redjennphd
04-28-2005, 01:54 AM
This is in response to Jenna's question below. Forgive the time to respond but haven't had a chance to get on the site.

It was quite fun. I'll start by saying that after the movie came out (there was originally alot of hoopla in the Deaf Community about hiring a hearing actress because they needed a name - until they saw the movie). The character was not born deaf so a hearing actress could be hired for the movie.

When I first met her, I made an arrangement to meet at a coffee house, and she being famous, I knew who she was but she didn't know me. SO when I saw her enter, I went up to her, wouldn't speak and led her to a table outside. I gave her ear plugs with the highest dB blockage and a headset that would then result in her not being ableto hear anything. I wouldn't speak to her using my voice and I can tell when people are just mouthing the words or actually speaking and would gesture (this went on for about 4 hours) about putting those things on, I asked for her cell phone and took from her, and through many gestures: explained to her she was not to use it (I had to make an exception for her business, but with her mother as her manager, we made it so her mother would do the calls and only let this girl do phone calls back if it was urgent related to another project, but then had to go back to our system). We had a great time and I had outlined for her to not watch TV with the sound on, to use the captioning, to even sleep with the ear plugs and use a "shake awake" alarm daily, how to use a TTY and talk to me on that, not use her radio in her car, not use her phone, also try watching the TV, no sound with no captioning to get the idea of lipreading even though this character could not lipread. I also had her watch some foreign channels without the sound so she can see how difficult it can really be because, reading lips is truly like trying to understand a foreign language without any sound - frustrating.

We met daily mostly for a number of weeks, there were only a couple times we didn't see each other daily, but we went to lunch together or shopping, I brought her to deaf events, gave her videos on sign, worked with her on the signs for this girl who had no language development and by the end of the film had language, so I had to teach her the language then teach her how to 'undo' the skill to make it like she would be in the beginning and how it progessed during filming (I was also on set every day, every moment, to make sure of this and the director, gave me final say on everything to make sure it was accurate).

She really worked so amazingly hard and did everything I told her to, so that when we were on set she wore the earplugs and went to work with me and interpreting for her and signing back and forth.

I also had to work with another well known actress who had to be fairly fluent in sign language (not ASL, more signed English) and I had her do the same thing but not to that extent, just to get the idea. Because, the person on whom her character was based, was only partly deaf in one ear and had had surgeries to correct the hearing she'd lost when her ex beat her, so we were able to be more lenient, but the teaching of ASL to her was the primary concern: so I taught her all her lines in ASL and of course this was a regular daily work process because when scripts would change or I'd see how shots were being done or what the director wanted or the size of the shot, I could adjust her signs accordingly. I had to work with her on very basic gestural communication that was done when she first meets this girl in the hospital (which really happened and I knew both women on whom the movie was based: the younger woman came and lived with me for a while and then spent weekends with me to live in a "Deaf Culture" home enviornment since the social worker woman did not live in a "Deaf Culture" household.

It worked out great, and having the producers and directors faith in what I was doing and how I worked with both of them, I got final say over the directors cut and my notes made (while I was then working in AZ on another film), I had all the dailies etc.: all my notes were what made the final cut, so I felt good that my notes and all my edit notes of which takes were the ones that worked best and why; the final outcome ended up being my edit.

The movie ended up winning a zillion awards and is actually up for another award for my work on it, at an upcoming International Disability Film Festival. I've already won a few awards for it and it won many other awards like the Media Access Awards, and my playing a nun who was the girls first teacher (a co-starring role) got me an emmy nomination. (which was wierd because then no one recognized me: they flatteded me out, put me in full habit and no body recognizes me from that role (I have long wild curly hair and have played more the wierd hooker or sexpot roles, so the nun was a long shot).

I did the same thing on another movie and I work similarly withanyone who is not deaf who has to play a deaf character for some reason.
If it's a deaf actor: a lot of work still goes into it. Just being born deaf doesn't make one able to play that character: there needs to be translations from the English text to ASL adn then work on the blocking and again following the directors vision, so alot of the same kind of work goes into it if it's a deaf actor playing the character or not; or any disabled actor playing a part where the character is disabled: it comes down to what kind of wheelchair would be used in that era of the film, certain props, accessibility, working with specific disabilities and how to work with them from the actors with various mental and/or emotional disabilities, I work with repretition and role play where they give a great performance and don't need a script (some can't read) and work with them on set and on call 24/7. It's really fantastic.

So that's how I did that for that one particular movie and afterwards everyone in the Deaf community said "wow I didn't know (the actress) was DEAF!!" - so it worked because she had deaf people believe she actually was deaf. She did me proud. I loved the work and I love the work I do when I get to put in all the ideas or other ideas on how characters should be or can be portrayed and get to work from development or with writers or with producers and with the actors. My experience of being on so many sets in my own career make it very unique to my abilities for the gig that just because a person is deaf or disabled, does not make them qualified to be a technical consultant (and the actor hired should never have to do that because other actors are not then doing 2 jobs like teaching sign language to other actors that need to know it and so forth. They should be able to show up on the set, do their job as actors and let the Technical Consultant - a good one - take any heat, solve any problems and make sure it runs smoothly so that if there were any issues or problems, they are solved long before anyone sets foot on the set. It's really exciting and I love it.

SO there's a little peak into the world of the Tech Advisor and how one can work with someone with various methods to get the best performance out of them while keeping with the following of Deaf Culture or the way a person of another disability lives etc..

meryl
04-28-2005, 02:12 AM
I don't get to check this place as often as I would like, but heard this topic was hopping. I was born deaf, so here are my honest thoughts:

I don't know whether to say, deaf, hard-of-hearing, or hearing impaired. The only thing I am sure is that I'm not Deaf because I am far removed from the Deaf culture. Technically, I was born profoundly deaf. But a lot of people take it to mean sign language is your primary language when I've mainstreamed throughout my life and married a hearie (term of endearment) and have been blessed with three kids who can hear.

One thing I would like to see go bye bye is "Handicapped Parking Spaces." Several of you mentioned "handicapped" is no longer acceptable. I agree. But no one talks about those parking spaces. Golf handicap - that doesn't bug me.

I refer to people as "a person who is..." but personally, I offer refer myself as a deaf person or hearing-impaired person. I'm not anal about such things -- but I do respect others. Just like I struggle with black and African American. I have friends of all races and heritages... yet, I feel like saying either word is offensive when there's a legitimate reason to say it.

If I repeated myself or missed something -- apologies! I had to skim the messages supah fast! Anyone who wants to know more... I write about that side of things in this blog (http://www.meryl.net/ci/). Originally, it was to talk about my experience in getting a cochlear implant (not exciting), but it has expanded to include my experiences growing up as a deaf person (there it is!) and my thoughts on the topic.

For instance, I understand the Deaf's cry against cochlear implants. Today, just about every child born deaf gets an implant so he can get an early start in communication. Eventually, the Deaf culture will thin out. But if it were me, I wish I could've had a cochlear implant when I was very young -- not available or good enough quality (we checked in 1984 when I was a teen -- not enough channels). I respect parents' decisions to have the child implanted as they want to give them a chance at communicating as normal as possible.

Meryl
http://www.meryl.net/blog/

nikianntaylor
04-28-2005, 03:42 AM
Hi, I've been skimming through the posts here, and it's been interesting reading. Even though I've been reading AW for years, I've never posted on the board. I'm an unofficial member of the Jenna Glatzer fan club. I've been in one of her books and have reviewed her books. I'm mildly hearing-impaired with about a 30 to 40% loss in each ear. It's been that way as long as I can remember. I wear a hearing aid and lipread. I have nerve deafness or sensorineural hearing loss. When I was young, I didn't even realize I was this way. The teacher wrote a note to my family saying that I didn't seem to pay attention like I should. I tried a hearing aid when I was around six years old but couldn't adapt to it. I started wearing one full-time at 12. I've had other medical issues too such as a misaligned jaw that I had to have surgically corrected, reproductive problems, and generalized anxiety disorder which included obsessive compulsive disorder and phobias. Actually the hearing loss, jaw, and reproductive problems are part of a syndrome. Thanks to medication and therapy, the anxiety disorder is better. I've written about my OCD and the reproductive problems for magazines but not the hearing loss.

My grandmother and great grandmother on my father's side started losing their hearing when they were young and wore hearing aids. My grandmother had surgery to replace a defective part of her ear. So my parents feel like they're experts at hearing loss. Interestingly enough, nobody else in the family had hearing loss other than the usual hearing loss with aging. My aunt(my father's sister and grandmother's daughter) had her sons' hearing tested, but they were OK. My aunt's had inner ear trouble but no loss while I've never had any inner ear trouble other than childhood ear infections. With the anxiety and hearing loss, I think I was drawn into writing because I could do it by myself with no limitations. Plus I have a shyness that just makes me follow solitary pursuits. I'm so thankful for the Internet because of electronic communication. I've never liked telephones.

My main character in my unpublished fiction has hearing loss. I'd like to share my own perception of it. The first-time hearing aid experience was weird. I could hear myself pee! I never could before. I had that and plenty of other new sounds. If I wrote about it all here, I'd never stop writing. I don't mind being called hearing-impaired. I'm not deaf so I don't know anything about that community. I think the anxiety disorder has been tougher than the hearing loss because that affects the way I look at the world and interact with people. Plus mental illness seems to have more of a stigma.

One thing I've noticed is that parents get embarrassed if children see my hearing aid and ask about it. I just tell them some people need glasses for better vision so I need a hearing aid for better hearing. It's really taken me awhile to accept all my quirks, but at 32, I've come along way.

Niki
http://www.nikianntaylor.com

meryl
04-28-2005, 04:09 AM
Niki,

You go! That's exactly what I tell kids like my son, who is six. I don't hear very well and wear hearing aids (implant) like some people wear glasses to see better. But alas, even with a hearing aid... no phone conversations with me. We're close to the same age.

Best,
Meryl
http://www.meryl.net/blog/

redjennphd
04-29-2005, 12:05 AM
Man, when I read about the "first hearing aid experience", I laughed so loud, all alone at my computer. Man that was the wierdest thing for me too: I was just like twitching my head around going "what was that", "what was that?". Oh it was unnerving. I don't hear that well with it but what I could hear then was bizarre and i had to relearn what I was hearing. Even now if I hear something I don't know where it is or what it may be and ask and it's usually a response like, "I thought I heard something but had no clue what it was".

But for the response of the hearing aid/eyeglasses: same as me - seems like the response we all agree on. I find people's kids who see me sign or whatever and then I speak, they're eyes are like saucers. So I explain I can speak but not hear and I also wear eye glasses and I say the same thing: that some people wear glasses and hearing aids and some people communicate with their hands, and I'll show them the sign for mom, if their mom is there and the sign for I Love You and tell them they can always say that to their mom even when they can't hear each other or for from far away. They get a kick out of that.

Yes the point about all people being deaf not being Deaf is something that so many people don't get. Just because you have a hearing loss doesn't mean you are the big D Deaf - and each person's preference of labeling is their own. I also have difficulties with the black vs African American. Not for me myself, but I have a friend who refuses to be called African American and there are others who do, so sometimes you don't know if what you think you're saying is 'politically correct' will actually be 'right' for that person. I am kind of err on the side of "non political correctness" but that's me and my way of injecting humor into it. I always ask how someone would like to be described or addressed by prefacing my deafness and that you can refer to me as the Deaf Chick, what about you, kind of thing. Each description is personal which is why all the 'political correct' terminology that has been created does NOT match everyone's beliefs.

the Deaf community likes to brag about it's being 10% of the population: not true. HEARING LOSS may be, but not Deaf Culture. ASL using Deaf Culture Deafies are approximately 1& of that 10%, and I try to remind many of them of that, which of course leads to arguments but I still stand by no matter how they try to make me take a side, that parents get the say so on whats best for their child until their child can verbalize and decide and understand their decision to change their communication methods or whatever.

So hear hear (heheeh) to everyone for contributing to this thread. It's been really great.

Talk to you all soon :) you rock:Hug2:

Mac H.
05-04-2005, 04:18 AM
On the subject of writing about disabilities: The May 02005 issue of 'Written By' has a really good article about the writing of a HBO movie about Roosevelt's life with his disability.

The full article is here: http://www.wga.org/WrittenBy/0505/nagle.html

Mac

Pamster
01-09-2007, 07:17 AM
I have lived with a physical disability for going on twenty years and I have to tell you that the first time I heard the word "Handicapped" I had an emotional breakdown because for the first time I realized that the word was a label I would be tagged with for the rest of my life. I'd be lying if I told you I enjoyed being disabled...but I DO fend for myself pretty well in spite of my use of a chair to get around.

My son was diagnosed with autism seven years ago and it was heartbreaking, but he does pretty good for a ten year-old with autism. I write a lot about disabilities, so far in every book I've written (and I have three kid's stories done along with one that is almost finished, then there are two that are about my disability, one of those is finished and one needs a good polishing to be ready for publishing) living with disabilities has been a big theme. I think it's up to people like me, who live with a disability, that need to step up to the plate and try to hit a homer so to speak.

Not saying I think any of my stuff is good enough to be the next Lifetime Movie Channel story of the week or something, but I definitely think my work is moving, realistic and entertaining. And that is what I aimed for, to gently enlighten the reader about what living in my world is all about, and i my kids stories, to show what living with a child with autism is like. I loathe the word "Handicapped" but accept the term, "Disabled" much better for some reason. I don't like "physically challenged" it sounds too much like a sporting term or something. Which was part of what I don't like about "Handicapped" because it's used in sports the way it is.

I hope to be useful to this community because of my experiences and because I simply eat sleep and breathe writing, it encompasses almost my entire day, at least in the back of my mind. I am sometimes working on plots and other things in my mind as I go through the day. I might look like I am simply shopping at the grocery store, but I am plotting mystories out or thinking about events I want to write about putting them into my character's lives and giving life to the words that I hope take the readers to the same place I was when I wrote them.

It's nice to meet you Jennifer, I hope that between the two of us we can do our part to help others here with any questions on disabilites that they might have. I know I am totally open to being asked things about anything I might be able to answer. One of my best friends was in a power chair because she was a quadreplegic. (forgive me if I splet it wrong-just about to hit the hay here) I hope to get the book I wrote about us and our friendship published in the next couple of years since it's a story I am really proud of. :)

Kate Thornton
01-09-2007, 08:24 AM
Just a quick note here - regarding "disabled" and "differently abled" - either term would suit me, but the other day in front of the supermarket I had a guy watch me get out of my car in the DP parking space and walk funny in my leg brace to the shopping cart rack.

He didn't inquire about my disability (I had a stroke a while back) or anything. He said, "Jeeze, Lady, what the f*** happened to you?"

I burst out laughing. So much for PC behavior.

What can ya do?

Another time a girl - a stranger at a shopping mall - went to great pains to tell me my shoes were ugly and I should consider getting something more fashionable. I explained that I wore a leg brace and had to wear the clunkers in order to walk. "No way!" she said. "I'd rather not walk than wear ugly shoes!"

Sigh! I hope she is able to dance and run her whole life.

expatbrat
01-16-2007, 09:24 PM
This is a facinating thread!

I have nothing to add, just wanted to say I am enjoying all of your input. This is really interesting.

Karen

RJ_Anderson
01-19-2007, 07:18 PM
I have a slightly different take on things, which others here may or may not feel is legitimate, but -- when it comes to writing a main character with a disability, I made the decision not to have him use softened or "PC" language in referring to himself and his condition. He's newly paralyzed, very bitter about being "trapped" in a wheelchair, and resents the attempts of his psychologist and others to convince him that he is just "differently abled". It's part of his character to be cynical, and refuse to indulge in language that he perceives (rightly or wrongly) as mere whitewashing.

However, I certainly am not promoting this character or his attitude as a model for anyone to follow -- it's quite plain in the book that his "realism" is not helping him, and that he needs to find a better way to cope. I had two quadriplegic friends read an early draft of the book, and both said they found his character to be credible -- "a bit of an ass, but a believable ass" -- and didn't see any problem in the way he or other people spoke about his disability, even though some less-than-PC language was used.

So while it is true that caution is called for when writing a non-fiction work about individuals with disabilities, it may not always be necessary or even appropriate in fiction.

My apologies if all of this seems pathetically obvious. I just hadn't seen that particular angle brought up in this thread yet, and I would hate to think of other writers feeling constrained in what they can say about their characters, or worse shying away from writing about people with disabilities at all, because they are afraid of giving offense by using the "wrong" language. I think the most important thing is to consider the context, and the thrust of the book as a whole, before deciding how to describe a person with a disability or allow them to describe themselves.

KimJo
01-19-2007, 11:44 PM
RJ, I think you have a good point. A character- or person- who is bitter and angry about a disability would refer to themselves differently from a character or person who has a different outlook. I work with high school students who have a variety of emotional and behavioral disorders, and they refer to themselves in ways that make me cringe. No one else is allowed to refer to them that way, but they do to themselves.

dahmnait
01-20-2007, 01:33 AM
He didn't inquire about my disability (I had a stroke a while back) or anything. He said, "Jeeze, Lady, what the f*** happened to you?"

I burst out laughing. So much for PC behavior.I had to laugh. :D

There are times when PC is just too much. My "disability" is more hidden. (In quotes because it isn't really a disability.) However, when it rears its ugly little head, I get noticed. People don't know what to do, they turn their heads not wanting to stare, they think I'm on drugs, they think that if they get close they will 'catch' something, the list goes on. For the most part it comes down to education. I would prefer that someone ask me, "What the f***," then to have some of the responses I have seen to my seizures.

A lot of people equate epilepsy to Tonic Clonic (Grand Mal) seizures. I have Myoclonic and Simple Partial seizures. The myoclonics make my limbs jerk, but I am typically aware. The simple partials make me look as if I am stoned, or at least that is what I have been told. Again, I look as if I am aware, and most of the time I kind of am, but in both instances I may not really be "there". So for me an honest question, no matter the wording, is quite refreshing.