Response to Rachel's "Why Im on DeafRead?"

this entry is in response to: http://cochlearimplantonline.com/blog/?p=52

Rachel

your blog is a personal blog – u have and continue to share a great deal about your personal life in your blog. just want to make that clear. but i totally agree u should not share more than u want to or are ready to. we must always ask ourselves about the things we choose to share and the things we choose to withhold – sometimes the things unsaid are the most important

when u listed ur identity characteristics u wrote:

I’m an artist, a writer, an editor, Jewish, American, a French speaker, outgoing, happy, motivated, and determined.

It is interesting that you have not listed that you are d/Deaf or a Cochlear Implant user

I think this is the contradiction that is kinda puzzling – how u often seem to be broadcasting about ur CI and its HUGE role in your life but then in the next breath u say – its no big deal having a CI, its not a big deal being deaf etc

this pull and push – to glorify and minimize the CI is confusing to me

u also at times have a very harsh tone towards “those deaf people” in your mainstream school and their “isolated” lives and the poor girl who was left in the rain by the bus driver because SHE could not speak like you can speak and “communicate with the wider population”

u often regulate ASL as a remedial tool for those who dont have CI or dont fully benefit from CI (u have lots of reasons why sometimes CI dont meet with the same succes as yours)

and sometimes you write things like “don’t tell this or that or anything …”

i do believe u when u write u know who u are and u are happy with with who u are. i am happy for u. i believe u when u say u have no need or desire to learn ASL. That is your right and i would rather u dont learn it if u only see it as an AID for the mute and “oral failures.” It is a language that to me is more brighter than the sun. It is a gorgeous, vibrant, rich, undervalued, underdeveloped, underexplored, underappreciated, and constantly under fire language. U r passionate about ur CI. DeafRead is passionate about ASL. It shall not be degraded and devalued in this space/place.

i did not need to learn ASL – i DESIRED to and WANTED to. u don’t – that is fine with me. Just dont trample all over the language in the process of stating ur desire not to learn it cuz ur “too busy”
Just as you have chosen not to practice Judaism – u can hold that position while still respecting those who do.

u seem to appreciate other cultures and languages and people but have formulated a very negative view of ASL and Deaf culture

u shared that u got ur introduction to “those deaf people…” from reading ur mom’s articles and those articles were in REACTION to some misconceptions ur mom felt Deaf ASL folks were saying about CI

u seem to be telling us u were introduced to Deaf culture and ASL as the opposite of what u r and in conflict of what u r – a deaf person with a CI. They were the FOE for you – they tried to make u feel bad about who u r. I am very sorry for this introduction to Deaf culture and ASL.

u also shared the impact of the film Sound and Fury had on you

u wrote:

“It was one of the most emotional films I’ve ever seen, and since I saw that I film, I began to appreciate my parents even more. Plus, I think, from my memories, that’s when I began to form opinions about the deaf community. That’s when I began to really think that the deaf community was full of selfish people.”

“full of selfish people” ?????

Have you watched part 2 of the Sound and Fury – the young girl and her two Deaf brothers have all been implanted since the filming of the first movie and this is covered in the second movie.

You reaction to the first film is very interesting – this film is a powerful work because it can act as a geiger counter almost – u can point it at any audience member and based on their reaction see which end of the spectrum they fall at – a Strong DEAF Center or a Strong HEARING center.

For example – when my mom who is a hearing person saw this film her reaction was “that grandmother is a #$%&*. Would she just butt out already and let that family raise their children as they see fit?”

Now my mom does not sign and when i began to learn ASL at the age of 20 she never tried to stop me from signing. She is way cool about Deaf culture, ASL and Deaf rights. She GETS IT because to her it is a different culture, language and community. Because she knows that in no way shape or form is being an ASL user an “isolating” condition

she also understands prejudice. she also understands the drive to make everyone the same is not the same as making everyone equal.

So when u saw the film – u were upset by the father – when i saw the film i was upset by the grandmother and the grandfather.

While u r upset by folks accusing parents who implant their kids as “child abuse” (i do not support folks saying this) – i was upset when the grandfather told his adult son “you are abusing your kid by not getting her an implant”

The bottom line is that parents make choices for their kids out of love, respect and hope. Just as u dont want ur folks to be judged wrongly by the Deaf community – i hope in turn u will not judge other parents who do not choose to implant their kids

parents who feel the medical risk of the surgery is too great for a non-life threatening “condition,” parents who want to fully accept their child for who they r naturally regardless of whether or not the CI is working that day or whether or not their speech is clear or whether …

CI does not = perfect, normal and automatically happy
ASL does not = perfect, normal and automatically happy

u have been blessed with many many many things. if u choose not to want to learn ASL – i wish it was because u r not drawn to that particular language instead of the fact that u seem to have a strong dislike for the language and its “selfish” people

I have seen comments that u and ur mom have made that very much upset me and frankly they exemplify language bigotry and audism. I know you can justify why you have this mindset

I have seen coments that have been directed to your mom and u that have made me very upset and frankly they exemplify Deafism. I hknow folks can justify their mindset

I can not condone or support either.

I have refrained from responding to many of your blog entries because i did not want to come off the wrong way. Because i did not want to contribute to any of the harm u have already experienced. Because i do not want to exemplify its open season on Rachel and Melissa.

it is not and it should not be. However, i have to ask you to give yourself some time to go back over some of your blog entries and try to read them with a different set of lens – try reading them from a Deaf person’s gaze. Maybe a Deaf person who was implanted at a very young age but did not meet the “success” that you have met and still experiences more treatments and pursuits of the answer by her/his parents. Try reading it from the perspective of someone who loves ASL, Deaf culture, and themselves. Who is incredibly happy that her/his parents gave them the language of ASL and have enabled her/him to reach this day in the full glory of who they are.

You must know that Deaf ASL people are as “successful” if not more than you are. Their success is not tied to a devise implanted in their skull. And with this statement i am not trying to minimize all the incredible work u and ur mother put into all of your successes – i am just trying to help you see that the ability to speak and hear is not EVERYTHING.

One of the most important things my parents have taught me is to be a “good” person

this is more important to them than how many languages i know, how many countries i have visited, how many films i have made, how many websites i have created, how many students i have taught, how many children i have raised, how many articles i have published

they raised each of us to be “good” human beings. I hope in turn i am doing a decent job in passing this on to our children.

In Judaism, Tikkun Olam is a very important principle – one i cherish dearly. It guides my way and i falter often. I am not always a “good” person. I often have to re-read my writings and my actions and my calls for advocacy to make sure – i am contributing to “healing the world” rather than harming it

i do think that ur experiences and ur POV are very important

i do feel u are my sister (though i am twice your age) and i care for you

i do think that you are a beautiful person

i do ask you in the future when u blog to re-read your post before clicking “publish” to see if you are contributing to healing the world
and i promise u i will do the same

lastly – i apologize for this lengthy comment

shalom

patti

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22 Comments (+add yours?)

  1. Robyn
    Mar 04, 2008 @ 01:51:40

    Great blog Patti. I still haven’t seen Sound And Fury.

    I find the gap between the Deaf community and Cochlear Implants in America quite puzzling at times. In New Zealand, the Deaf Community is much more accepting, probably because quite a few prominent people in the Community have them, and have shown that it didn’t in any way, shape, or form, stop them contributing and mixing and loving the Deaf Community. They all love their implants too.

    I’d be interested to know if NZ is the only country that this has happened to – it is probably a lot to do with the size of our community – we’re only a small country in comparison to the USA.

    Cheers
    Robyn

  2. MM
    Mar 04, 2008 @ 02:50:33

    I think it is common knowledge CI wearers are aware the ‘Deaf’ will never accept them, so they act accordingly.

  3. Jay
    Mar 04, 2008 @ 04:52:38

    Long response, but well worth it! You put things into words that I (and many others) feel but was unable to explain as eloquently as you did. Thank you.

    This debate falls in the same category as religion, PC-Mac, Programmer’s code editors, and other areas where loyality is powerful, and any discourse are easily turned into battles. People get hurt.

    I always believe everyone is good. When you meet a person for the first time, you may find the person interesting, but often times its only a fleeting moment when labels and beliefs catch up and cloud the person. The person transforms into some kind of monster or something; when its all in your mind. Sure, it works both ways, and that is unfortunate.

    Patti — thank you again for doing this wonderful piece.

  4. Karen Mayes
    Mar 04, 2008 @ 06:27:32

    I appreciate your point of view. What strikes me about Rachel’s blog is the strong parental involvement in her life (as well as her younger sister’s life) and to me, that is the main key for her success.

    I noticed that on Rachel’s blog, two words ending with “ism” (audism and deafism) are strongly sensed and both parties (deaf and hearing) immediately picked it up. Words are very limiting and yet powerful, leading to many misinterpretations and misjudgments.

    All we can do is to watch her to evolve (I joined deaf community at the age of 22 years old, had deaf children in my 30’s, etc… experiences = changes in attitudes). What impresses me is her steadfast and level-headed blogs and comments… she is strong, all right, just like her mom.

    I believe that she is trying to say that ASL should not be an answer for everything and that we need to respect her opinion instead. It is her journey, after all. It is up to her to include ASL or not… we cannot make the decision for her.

    I have seen at how parental involvement in ANY children’s lives can help children to succeed… Rachel had strong adult models… kuddos for her.

  5. pdurr
    Mar 04, 2008 @ 06:52:06

    Robyn – in NZ are infants being implanted with aggressive non-signing programs?

    generally i dont see the Deaf community being upset by Deaf adults choosing to get implants because they see it as their choice and the critical language acquisition period has passed by that time

    MM – and vice versa, yes?

    Jay – yes u have hit it on the head. CI are a very polarizing subject and emotions flare. many get harmed in the process of our debating. it becomes an UNcivil war of words.

    Karen – yes we are all constantly evolving and experiences totally shape us.

    Re: parental involvement yes that is very important

    R and M statements are more than just saying “ASL is not the only way”

    Just as many comments by other b/vloggers that demonize CI or CI users are not simply saying “CI is not the only way”

    i have commented in many b/vloggers sites when i see Deafism and have asked for caution, compassion, and care

    When we see audism – we must do the same

    peace

    p

  6. moi
    Mar 04, 2008 @ 08:03:35

    Patti,

    This was a beautiful, heartfelt, and very moving gesture to reach out and build bridges while standing up for all Deaf people who see the value of sign.

    You were able to articulate in a loving, caring manner what I have been unable to say – my respect for Rachel’s choices and my desire not to cause her pain in any way, but my dismay at how her mother’s and her own words exemplify language and culture bigotry, as you said. Thank you so much for crafting this post and taking the time to let her know that we, as a whole, are not “out to get her” or anything like that.

    Slightly off topic but connected… I find I really hate the term “deafism.” I wonder why we’re willing to accept a term that links the word “deaf” with something negative? We need a new term to describe this concept, imo.

    More on audism and its’ corollary, formerly known as deafism… I think what you did in this post was important, Patti. You identified audist behaviors and statements. We need to be doing more of that. This is the single best tool for eradicating audism in our community – without calling anyone an audist. Point out STATEMENTS and BEHAVIORS while keeping Tikkun Olam in mind.

    Its’ corollary, on the other hand, is a different matter. I think many individuals are too ready to jump on people for this, when it really isn’t. There have been some very hurtful comments in DeafBlogLand and in the Real World that are prime examples of this, yes. Those should be identified and denounced, just like audist behaviors and comments should be too. However, often statements that aren’t are wrongly labeled. Anytime anyone questions cochlear implants as a concept/a system, even when the person says they wouldn’t reject nor criticize an implanted person, people jump on the person, saying they feel offended, personally rejected, the person saying that is intolerant, etc, etc. All because they dare to ask us to look more carefully at the auditory-industrial complex. If anything, I think we need to be more careful about labeling behaviors and statements as being the corollary, and more willing to identify audist comments and actions. But don’t forget to be kind about it, as you’ve pointed out so well.

    Patti, again, I am in awe. I love this post so much. Thank you so very much for your gentle, loving, yet honest and assertive post!!! I hope Rachel and her mom will take it in the loving spirit it is intended and ponder what you have said. Thank you, Patti.

  7. pdurr
    Mar 04, 2008 @ 08:25:20

    Moi

    big thanks for ur comment

    re: Deafism – yes the term is not great to me – can u suggest a better term for when folks hold the belief that to be Deaf is superior to be hearing or hearing like?

    Deaf centric comes to mind but that is really confusing in the the blosphere – many folks advocate for Deaf Centeredness which is fine and affirming cuz it doesnt come at the cost of degrading another but they use the term Deafcentric

    the term Afrocentric is used by some to be a positive and affirming valuing of what it means to be African-American but by others to mean a more ethnocentric stance

    i do not support any form of ethnocentricism

    can anyone suggest a better term – pls dont say Deaf militants ; )

    re: how advocates get labeled as extremists but then folks cant really pinpoint anything they said that was offensive except their views are contrary to their own – yeah this is an issue

    hope to blog on that soon

    peace

    p

  8. brenster-
    Mar 04, 2008 @ 09:50:06

    This is really good post! I really like the way you put your thoughts into words. I try to follow your example, but sometimes it is not easy. The words are powerful, yes, so it is important to use word choice carefully. That do not apply only to Rachel and her mother, but also to many other commentators who are not careful with their word choice. Also, sometimes it is hard to judge what they are really saying based on words, esp when they used wrong word choice since we can’t see their body languages.

    MM – Patti is correct, vice versa! See, it only continues that way because people like you keep on spreading out misconception about the Deaf community. I already met many CI users in the Deaf community, and I have chatted with them. They are great people. And I enjoyed meeting them. Know why? Their attitude is in right place; they do not use CI to rub into us; they don’t use CI to define them; they don’t credit CI for their successes but credit themselves for their own successes; they don’t view that we use ASL and/or NSL because we don’t have CI, etc. BIG DIFFERENCES!

  9. pizzaboy
    Mar 04, 2008 @ 11:15:15

    Very impressive piece you wrote!! You hit every word correctly.

    After reading Rachel’s blogs, I enjoy her blogs. However I felt that she’s biased. She was defending CI, just because her mother was troubled by those deaf people. Rachel kept being closed mind. I felt real sorry for her. At her age, it s real good timing to explore the cultures.

    The more she writes, the more holes she digs.

  10. Barb DiGi
    Mar 04, 2008 @ 13:47:59

  11. kim
    Mar 04, 2008 @ 14:49:30

    I truly appreciated this heartfelt response to Rachel. You said how you felt, and yet were able to express caring for her at the same time. Sometimes we do not realize how our words can hurt others. She is so young. Kids that age don’t always see things from anothers’ perspective. I feel her mother has been through a tough time, as well.

  12. Ella Lentz
    Mar 05, 2008 @ 00:40:11

    Thanks Patti. Like several other commenters above, I thank you for eloquently and sensitively yet firmly express many sentiments I felt when reading blogs like Rachel’s on DeafRead. Am ready to quit DeafRead, but then along comes blogs and vlogs like yours…that keep me hanging on.

  13. pdurr
    Mar 05, 2008 @ 07:56:04

    brenster – hand wave!

    pizza boy – i do worry that by having posted this blog R will now dig in deeper. It is not my intent or desire. Only she can make the choice of how she wants to receive it.

    Barb – thank u for blogging a response. u r a master at pulling out the details and responding to them accordingly. Ironically – while you and Melissa have taken very different paths u have much in common. You both have two d/Deaf children whom you totally cherish and would go to the end of the world to do what is best for them

    kim – thanks for ur note. I will keep R and M in my heart

    Ella – oh girl if u leave – i am so outta here! There have been MANY times when i have said i can not visit DeafRead – it is not a safe place for me. This is not only because of the CI promotional blogging but also because some of the cruelest comments i have seen emerge by both sides of the extreme. the infighting and twisting of words and perspectives also pains me greatly. Im also way to busy for some of the junkmail that gets sent around here but then there will be a posting by Joey Baers – and a MOVIE no less – ya hoo my heart sings. or ill hit a comment by someone (usually someone from this above comment section) and ill sigh a sign of relief – ah wisdom, ah peace, ah goodness manifests itself amongst all this noise or then there will be a little note in my email inbox – Ella’s Flashlight and i RUN to it to get my much needed installment of hope

    peace

    p

  14. brenster-
    Mar 05, 2008 @ 13:16:36

    I seconded Ella – I’m about ready to say goodbye to DeafRead.

    Constant negative posts and comments full of distorted facts from certain bloggers and commentators are not worthwhile of my time.

    I feel it’d be more productive of my time by doing with people on certain projects instead of reading posts that are full of “talk, talk, talk” but no actions.

    I only came back, because of some, sadly not that many, v/blogs with good messages. I will give it a few more weeks with DeafRead. After that, I will see… perhaps, I go with RSS.

  15. moi
    Mar 05, 2008 @ 17:21:10

    Patti, to answer your question, I don’t know. I’ve thought about it. For now, I’m describing the action rather than trying to label it. To me, audism is more important, since it is more pervasive. We internalize it and project it onto others. Neither is acceptable, of course. But since we are an oppressed minority, going to the other extreme is a normal response. To move beyond that stage requires maturity, processing, and evolving beyond the need to do that. In my humble opinion, what we need to do is recognize that it is part of one’s Deafhood journey, kindly supporting the person toward being a better human being, AT THE SAME TIME that we make it clear that that isn’t acceptable. Me make sense?

    As for wanting to leave DeafRead, I’d like to say I can completely relate. I’ve put the blogs I enjoy on my Bloglines.com (Internet-based RSS aggregator) account and check it before I check DeafRead. I’m still giving DR a chance, waiting for the announcement that should be coming soon, and seeing how things go. One reason I’m staying is articulated in my most recent post (click on my name and you’ll see the post I mean). I wasn’t referencing DeafRead in the post, but the principle remains (the italicized quote) so Ella, Brenster, and Patti, please stay and fight the good fight with me! *smile*

  16. pdurr
    Mar 07, 2008 @ 10:45:24

    moi – smile. agree with ur point above. i still think we need a name for when folks go the opposite extreme and would rather we come up with the term ourselves but cant really suggest a good one right now

    i did go to ur blog entry at
    http://randomthoughtsnmusings.blogspot.com/
    the trials of being a passionate person…
    awesome

    left a comment but it called me vicki
    smile

    re: leaving DeafRead – i dont want to blame DR itself – we all play a part in what is in here and the tone that is set

    im grateful for your voice, reasoning, and compassion

    peace

    p

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  18. cnkatz
    Apr 08, 2008 @ 00:19:43

    Patti,

    I reread this post a few times just today before linking it to my 04.10.01 post. Click on my name above to go there.

    Tikkun Olam, too, we must.

    Bless you.

  19. BEG
    Apr 09, 2008 @ 09:28:46

    Someone above said: re: Deafism – yes the term is not great to me – can u suggest a better term for when folks hold the belief that to be Deaf is superior to be hearing or hearing like?

    In my experience, any rejection of the concept that deaf is inferior to hearing is considered to be promoting deaf as superior to hearing. It doesn’t matter how many disclaimers are tacked onto this.

    So, to me, deaf-centric is fine. You’re not going to come up with anything that someone, somewhere, won’t sneer at as saying deaf > hearing.

    It’s kind of like those studies that show when boys and girls participate absolutely equally in the classroom, the boys think the girls are getting the majority of attention from the teacher.

    Cynical? Me? Yeah.

  20. Melissa
    Jun 07, 2008 @ 08:02:15

    Patti,

    First of all, let me say that I greatly appreciate the tone of your post. Rachel and I have learned a great deal from the time she first put her blog up on DeafRead to now. Up until that point, she and I had had minimal interaction with the deaf culture for years, and our prior experiences, which I experienced firsthand and which she’s heard and read about for years, were not pleasant. When Rachel was implanted in 1989, and even before that when we chose the oral approach for her, my husband and I received a great deal of criticism, some of it very nasty, and most of it unasked for. Thus, that was our experience with the deaf culture, which we then went as far away from as we could to raise Rachel and then Jessica apart from the hostility that we had received early on. That said, what being on DeafRead has helped us understand is that not only are things very different today with many in the deaf culture getting CIs, but also the stereotypes that we encountered early on are a minority today, and there are many who have been warm and welcoming to her. Certainly, the outpouring of support for her from so many has been very heartening.

    There are still those who call us “audists” because we still support CIs and AVT without ASL in early childhood as an option for deaf children. I’d be lying if I said otherwise. That does not mean, however, that I think this is how all parents must raise their deaf children. Rather, I think that they should have access to accurate and thorough information about all the approaches and then make the decision that best fits their family. I believe that all parents have the right to make this choice, that they should be supported after making this choice. I may not agree with the choices that other parents make in terms of not making the same decisions for my own children, but it is absolutely parents’ right to make these decisions. The issue that I still have is with those, such as the founders of the Deaf Bilingual Coalition, who want to force ASL on all deaf children. They no more have the right to do that than I do to state that all deaf children by law must receive CIs.

    As for Rachel and her identity – It is absolutely a contradiction. The CI is a big part of her life and who she is because it has enabled her not to have her deafness be a major part of her everyday life. While those who read her blog see the part of her that talks about her deafness and CIs, when she is at school, with friends, or out in life, she can move in her world with ease and not focus on her deafness and not let it define her.

    To give you my view on “Sound and Fury” – I was angry at both the father and the grandmother. I felt that they both had their own agenda and couldn’t see past it. The father was not looking at his daughter as a human being separate from him who might benefit in ways that he could not or did not want to from a CI, and the grandmother was trying to push what she wanted on the parents, which wasn’t her place. She could have provided them with information, told them she’d be there to help with auditory training and any needed support, and left the decision in their hands.

    So, in summary, do I think that deaf people who use ASL can lead successful lives? Absolutely. However, Rachel recently received an email that I think speaks to the future. It concerned a teenager who was raised totally with ASL without a CI, and now she’s asking her parents why they didn’t get her a CI when she was a baby and so that she could hear and speak. We have an opportunity with today’s technology not to leave children with these kinds of regrets. With ASL or without, the ability to hear and speak is not a bad thing and gives today’s deaf children the ability to make their own decisions about their future in the deaf community.

  21. pdurr
    Jul 03, 2008 @ 12:51:18

    Melissa

    Thank you for this comment. it helps me a great deal because it affirms that we often understand and SEE things depending on our vantage point – where we are standing / our center.

    You conclude with a wish that future children need not have the regret that they were denied the right to hear due to parent(s) not getting them an implant.

    I am hard of hearing and can “function” in the hearing world “successfully” yet i have a regret that i did not have ASL in my life as a child. I do not blame my parents. I am not angry with them at all. There is something stigmatizing and burdensome in trying to be that which you are not – a hearing person in a non-hearing body. There is something liberating for me to be a Deaf person within the Deaf community even though i am not fully Deaf

    This is why i support bilingualism / biculturalism. I do not see any harm or anything wrong in giving a child ASL and English.

    I can understand why some parents are resistant based on the traumatizing encounters you mentioned above.

    I can understand it also because some parents fear the two languages will confuse the child or that all their attention and focus most go into the area of speech and auditory training.

    I can understand it because i have seen the pain in parents faces – this searching, this questioning, this defensiveness

    Parents seek to do best by their children

    I am still struggling to see how giving a child two languages –
    1 that is fully accessible via the eye (if they child has no visual problems) and 1 that is used by the majority culture is a BAD thing or a FORCING thing

    I am glad that your daughters have not experienced any complications from the CI surgery

    I am glad that their CI have not failed them and they have not had to try to “function” without them which i imagine would be quite traumatic given they do not know the language of the eye and only languages via the ear

    I am glad that your daughters are happy and healthy and smart and strong

    I will be honest with you because you have been honest with me – i do wish Rachel could be a bit kinder – could show love and caring for people who do not value speech and hearing like she does, for people who do not speak and hear like she does, for people who love ASL and being people of the eye and wish her no ill-will or harm

    I am not saying this about the people who have launched verbal attacks against her or caused her harm

    i am just saying this for people who are different from her – who use a different language, hold different values, and belong to a different culture

    i hope i have not hurt u in any way in what i have stated above.

    Melissa, i know that u r a loving mom.

    at the same time – I also know that you and Rachel have both typed things that i have found to be offensive and hurtful and audist. I am NOT calling you or rachel audists. You are not. To earn the title of an audist i believe a person must actively cause aggressive and physical harm to others based on the belief that to hear and to speak is superior than not being able to hear or speak. I do not believe u have acted on your belief system beyond typing comments and your work within organizations that do not provide the full information re: ASL, visual acuity, and Deaf culture

    So i do not call u an audist but i do believe u have some audist thinking.

    If u talked to be long enough – we would see that i have some homophobic thinking, some racist thinking, some misogynistic thinking, and even some audist thinking myself

    i depend on all those around me to lovingly point this out to me so that i might examine my thinking, correct my actions, and grow

    I thank you again for leaving your comment and i would welcome a chance to chat with u and or Rachel via relay any time you desire

    Much peace

    Patti Durr

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