[Ohio-talk] What I Want!

Thu Mar 7 23:28:07 UTC 2013

Hi Suzanne and All,
We have to educate every day. We will always have to do this. Sometimes it's just a minor thing and sometimes it's pretty significant.
It's really interesting when you are a blind parent of a children with multiple disabilities you have adopted.
That's throws a few people especially when you stand up for your child and expect them to be treated with dignity and respect.
Of course we also need to expect the same for ourselves.
Sometimes we just have to be blunt and firm about things. This isn't to say that we should be aggressive. We should just be assertive. 
If we have to say and do more that's just what we have to do.
Some people really benefit from what we can teach them.
I enjoy participating in a program in Toledo for Physicians and other medical personnel talking about children with Chronic Care Needs. I also get to throw in the piece about being the blind parent of children with these Special Needs.
It's nice to be able to educate people when you are able to go it in a setting that is not emotionally charged.
I can really say a lot more now because I have no concern about these medical personnel caring for my girls.
Those of you who know me know that I was more like a Mother Tiger than a Mother Cat for them.
These comments we are sharing might be amplified for an article.
Colleen Roth

----- Original Message -----
From: Kaiti Shelton <kaiti.shelton at gmail.com>
To: "'Ationfb of Ohio Announcement and Discussion List'" ohio-talk at nfbnet.org
Date: Thursday, March 7, 2013 2:28 pm
Subject: Re: [Ohio-talk] What I Want!

>
>
> Hello, 
> 
> I really enjoyed the poem too.  I haven't had much trouble with my actual
> doctors, but this really reminded me of all the medical students and
> residents who have looked at my eyes and just talked to my doctor about the
> diagnosis.  I think I've only had one or two who actually asked what grade I
> was in, if I liked school, basically made simple pleasantries with me.  I
> can even remember a particular occasion when one student asked exactly what
> I could see, and then was kind of caught off guard when my doctor said that
> he would have to ask me about that instead of him.  I think doctors need to
> be reminded that we're not lab rats for them to look at and prod, and we
> don't need other people to speak for or be spoken to for us.  
> 
> Kaiti Shelton
> University of Dayton---2016
> Music Therapy Major, Psychology Minor, Clarinet
> Secretary, Ohio Association of Blind Students (OABS)-NFB
> Member of Alpha Phi Omega-Alpha Gamma Xi Chapter
> 
> 
> 
> -----Original Message-----
> From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of Deborah
> Kendrick
> Sent: Thursday, March 07, 2013 1:34 PM
> To: 'Ationfb of Ohio Announcement and Discussion List'
> Subject: Re: [Ohio-talk] What I Want!
> 
> Suzanne,
> This is lovely — and so beautifully hits the mark.  I have had some
> particularly unnerving experiences just lately in medical offices, so it
> strikes a strong chord indeed.  
> I wanted one line to read a bit differently, anticipated that it would, in
> fact.  It is:
> You come out from behind your white coat, and I'll come out from behind my
> diagnosis.
> For us, it could so easily say:
> You come out from behind your white coat, and I'll come out from behind my
> white cane.
> Thank you for sharing.
> Peace,
> Deborah
> 
> -----Original Message-----
> From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of Suzanne
> Turner
> Sent: Thursday, March 07, 2013 12:35 PM
> To: ohio-talk at nfbnet.org; Jww54 at sbcglobal.net; Delcenia at prodigy.net;
> rskill2008 at bellsouth.net; CRDavisjm at gmail.com; GMH10 at case.edu; Alexis
> Vinick; Jim Hlavaty; Janice Hannah-Hardy; Sterling Garrett; Carlton Toppin;
> Judy Post; Nicole Kahn; Krystle Williams; belinda.richardson at tri-c.edu;
> Brooke Dowdy; William.H.Turner at ssa.gov; keylinhartfield at yahoo.com; Tylar
> Hartfield
> Subject: [Ohio-talk] What I Want!
> 
> Good Morning,
> 
> The poem below is a collaboration of CSC employees asked by medical Students
> to dialogue about our experiences as patients seen by area physicians.  I
> hope you will find the poem that their Instructor has written based on our
> experiences and conversation enlightening.
> 
> Suzanne
> 
> 
> What I Want
> 
> by Stats Ky Bey, Dr. Anthony Easley, Stanley Griffin, Alicia Howerton,
> 
> Moreed Kamal and Suzanne Turner
> 
> When I step into her office, I want my doctor to look at me and see the
> whole human being that I am.
> I want her to talk to me, not the sighted person who drove me here.
> And if she pronounces a heavy diagnosis without acknowledging me, I'll ask,
> "Since you're only talking to him, can I give my sighted friend the cancer
> instead?
> This is my appointment, and I'm paying you to talk to me. So talk to me."
> 
> I want all insurance companies to get this under their skin:
> I'm a whole world more than a name, number, and dollar amount.
> And for all my doctors to remember: I am not my body parts, and not my
> diagnosis.
> So, please, let up on your typing while I'm talking, and turn off your
> beeper so you can sit still long enough to hear my story.
> Look, I'd like to know your story, too.
> You come out from behind your white coat, and I'll come out from behind my
> diagnosis.
> Even if I have to pack us both a lunch for my visit with you:
> Please. Sit a spell. Make yourself comfortable. Take your time.
> 
> And while we're at it, let's gather a full team of human beings to lend me a
> hand as I stand up from my heavy diagnosis.
> Not just medical experts, but those who've been through this, too, folks
> willing to share the wisdom, wipe the tears, and coach me on how to deal
> with this new version of who I am.
> Edify me. Give me something more than bottles of pills rattling around with
> side effects worse than the disease.
> Do not send me off solo into my anger and grief.
> Help me carry this pain. Cry with me.
> 
> And once this healing has begun,
> I want to walk out from behind my diagnosis and come back into the
> community.
> To be seen the way I look on paper-rich with credentials and experience.
> And recognized for having my own kind of vision.
> I want everyone to understand: It's a scientific fact that a tree cannot
> grow strong without a strong wind to challenge it.
> When people see me with my cane, I intend for them to behold my whole,
> entire tree, from the root to the fruit. To look beyond the rough weather I
> have withstood and focus instead on the way I'm standing, and standing tall.
> To listen to what I'm saying and to think, This tree has got it going on.
> It's strong, it's blooming, and it's beautiful, from the root to the fruit.
> 
> 
> Suzanne Turner, BSW, MPA
> Employment Coordinator and Benefit Specialist
> 
> Cleveland Sight Center
> 216-791-8118 (main)
> 216-658-7350 (direct)
> 216-791-1101 (fax)
> sturner at ClevelandSightCenter.org <mailto:sturner at ClevelandSightCenter.org>
> 
> Visit our website at www.ClevelandSightCenter.org
> <http://www.ClevelandSightCenter.org>
> 
> 
> 1909 East 101st Street
> P.O. Box 1988
> Cleveland, Ohio  44106-0188
> 
> Our Mission: To empower people with vision loss to realize their full
> potential, and to shape the community's vision of that potential.
> 
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