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Re: [Bioethics] Invitation to Sign: Statement of Common Principles

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  • Kathy
    Steven, My local Arc and State Arc would not even submit an email to their lists for a protest of Cranford/Schiavo here in Minnesota-just location and
    Message 1 of 14 , Nov 1, 2005
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      Steven,
      My local Arc and State Arc would not even submit an email to their lists for a protest of Cranford/Schiavo here in Minnesota-just location and information.  I do not think that that they have even emailed this very statement to their listserv.  Minnesota Arc has completely stayed out of it, no stance, no comment, no nothing.  And, I think that even Arc US has been "behind the scenes" in this rather than forthright and out so to speak.  My son has profound mental retardation (since birth), and I have considered myself an advocate and Arc member (10 years), up until the Schiavo incidence and the Arc's silence.  I consider this entire debate to include who and how we are going to value or not value my son's life, so it is really quite personal for me.  I view the world in the light that my son provides. 
       
      I am not much for trade-offs in life, and I don't like the middle of the road.  Somehow, that has never worked for our family. 
       
      I do however, appreciate the efforts made at consensus building.  I appreciate the ability that others have to negotiate.  I appreciate mostly the work of Not Dead Yet.
       
      Thanks,
      Kathy Minnesota
      ----- Original Message -----
      Sent: Monday, October 31, 2005 11:26 AM
      Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

      In a message dated 10/31/2005 8:34:29 AM Central Standard Time, kitkat24@... writes:

      I had a few thoughts in regards to the statements too.  I must say that I was at least semi-satisfied that Arc had signed onto anything that addresses the issue of euthanasia that have cognitive disabilities.  I have been so disappointed that a group that was initiated by parents to address issues related to persons with mental retardation has side-stepped this significant issue.


      First,

      the *national* Arc has had pretty strong positions on euthanasia through withholding
      of treatment for over 15 years.  The state chapters don't always pay attention or
      agree with those positions - the same goes for the Arc's stance on community
      inclusion and opposition to aversive "therapy."

      Second,

      this statement is the result of a wide arrange of players.  It is not as radical as
      several of us would have liked.  But the idea is to get as many organizations as
      possible to take a stand and to get it on their collective radar.

      It does not prohibit endorsers from advocating from stronger stances as as
      individuals or organizations.

      Consensus statements represent a series of trade-offs.  Make the language too
      strong and specific and no one signs on.  Make it too vague and broad and it's
      meaningless.  We tried for the best balance we could achieve with the players
      we had.

      The other issue, of course, is time - we could work on this for *months* and still
      have people dissatisfied with the product.  In the meantime, folks like the Hastings
      Center "gang of four" will be doing their Congressional briefings on the topics.
      They're doing one on Nov. 10th in a Congressional office building.

      We can pretty well assume the disability community's concerns over what
      they're calling "end of life" matters will be ignored or misstated.

      --Steve

      Stephen Drake
      Research Analyst
      Not Dead Yet
    • sndrake@aol.com
      In a message dated 11/2/2005 9:41:43 AM Central Standard Time, ... While the Arc might not have gotten the press attention it deserved (none of the disability
      Message 2 of 14 , Nov 2, 2005
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        In a message dated 11/2/2005 9:41:43 AM Central Standard Time, kitkat24@... writes:

        And, I think that even Arc US has been "behind the scenes" in this rather than forthright and out so to speak. 

        While the Arc might not have gotten the press attention it deserved (none of
        the disability community did), the Arc joined the amicus brief filed by NDY
        with the Florida Supreme Court.  The national Arc endorsed the congressional
        legislation that allowed the appeals process to move forward in an attempt
        to halt Terri Schiavo's starvation.

        Steven Eidelman, who recently left his position as E.D. of the national Arc,
        coauthored an op-ed with me.  Despite the Arc's best efforts, no newspapers
        picked it up, but it was circulated within the national Arc's membership and
        to the larger disability community:

        All Lives Equal Under the Law
        http://www.notdeadyet.org/docs/equallivesUCPeditorial0405.html

        Stephen Drake
        Research Analyst
        Not Dead Yet
        7521 Madison St.
        Forest Park, IL 60130
        http://www.notdeadyet.org

      • Ironsides
        Believe me, I also admire diplomatic organizations such as NDY, and realize the uncomfortable position they have working to build a co-ordinated united front.
        Message 3 of 14 , Nov 2, 2005
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          Message
          Believe me, I also admire diplomatic organizations such as NDY, and realize the uncomfortable position they have working to build a co-ordinated united front. The more organizations as well as independent activists who can unite together the better, to show our force of numbers behind necessary paper-work to shutdown euthanasia passively.
           
          Concerning ARC, I'm not personally involved with any groups. But after reading this second post from you to Stephen, I loaded ARC's website. http://www.thearc.org/  Maybe one reason they don't agressively fight against euthanasia or assissted suicide, is because of some of their sponsors. After Terri Schiavo's final death on March 31, I did some dirt digging, and learned how much control the Church of Scientology wields in the Culture of Death. It turned out, that Scientology owns many real estate and insurance companies. Whether Mutual is controlled by Scientolgy, I don't know. But organizations on sponsorship have to follow their sponsors' wishes, just like the newspapers do.
           
          -----Original Message-----
          From: Bioethics@yahoogroups.com [mailto:Bioethics@yahoogroups.com] On Behalf Of Kathy
          Sent: Tuesday, November 01, 2005 8:58 AM
          To: Bioethics@yahoogroups.com
          Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

          Steven,
          My local Arc and State Arc would not even submit an email to their lists for a protest of Cranford/Schiavo here in Minnesota-just location and information.  I do not think that that they have even emailed this very statement to their listserv.  Minnesota Arc has completely stayed out of it, no stance, no comment, no nothing.  And, I think that even Arc US has been "behind the scenes" in this rather than forthright and out so to speak.  My son has profound mental retardation (since birth), and I have considered myself an advocate and Arc member (10 years), up until the Schiavo incidence and the Arc's silence.  I consider this entire debate to include who and how we are going to value or not value my son's life, so it is really quite personal for me.  I view the world in the light that my son provides. 
           
          I am not much for trade-offs in life, and I don't like the middle of the road.  Somehow, that has never worked for our family. 
           
          I do however, appreciate the efforts made at consensus building.  I appreciate the ability that others have to negotiate.  I appreciate mostly the work of Not Dead Yet.
           
          Thanks,
          Kathy Minnesota
          ----- Original Message -----
          Sent: Monday, October 31, 2005 11:26 AM
          Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

          In a message dated 10/31/2005 8:34:29 AM Central Standard Time, kitkat24@... writes:

          I had a few thoughts in regards to the statements too.  I must say that I was at least semi-satisfied that Arc had signed onto anything that addresses the issue of euthanasia that have cognitive disabilities.  I have been so disappointed that a group that was initiated by parents to address issues related to persons with mental retardation has side-stepped this significant issue.


          First,

          the *national* Arc has had pretty strong positions on euthanasia through withholding
          of treatment for over 15 years.  The state chapters don't always pay attention or
          agree with those positions - the same goes for the Arc's stance on community
          inclusion and opposition to aversive "therapy."

          Second,

          this statement is the result of a wide arrange of players.  It is not as radical as
          several of us would have liked.  But the idea is to get as many organizations as
          possible to take a stand and to get it on their collective radar.

          It does not prohibit endorsers from advocating from stronger stances as as
          individuals or organizations.

          Consensus statements represent a series of trade-offs.  Make the language too
          strong and specific and no one signs on.  Make it too vague and broad and it's
          meaningless.  We tried for the best balance we could achieve with the players
          we had.

          The other issue, of course, is time - we could work on this for *months* and still
          have people dissatisfied with the product.  In the meantime, folks like the Hastings
          Center "gang of four" will be doing their Congressional briefings on the topics.
          They're doing one on Nov. 10th in a Congressional office building.

          We can pretty well assume the disability community's concerns over what
          they're calling "end of life" matters will be ignored or misstated.

          --Steve

          Stephen Drake
          Research Analyst
          Not Dead Yet

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        • Kathy
          MessageI spoke with an Arc Representative (national) and I was told that some of Arc s Constituents were pro-euthanasia/assisted suicide. I asked who those
          Message 4 of 14 , Nov 4, 2005
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            Message
            I spoke with an Arc Representative (national) and I was told that some of "Arc's Constituents" were pro-euthanasia/assisted suicide.  I asked who those constitutents were.  I was told, "people with terminal illness, AIDS, etc".  I asked how many paying members of Arc were people that had AIDs, Terminal Illness etc as their primary diagnoses.  I was not given a number.  I also commented that I hardly considered these other groups of people advocates for my son and doubted that they would be advocating for least restrictive environments and inclusion and the things that we advocate for. 
             
            I think on a more generalized level they did not want to offend other advocacy groups by coming out in support of Terri Schiavo's life.  I vehemently disagreed with that "stance".  If Arc did not represent Terri, who on earth did?  And, what does that mean for my son?! 
             
            Kathy MN
            ----- Original Message -----
            From: Ironsides
            Sent: Wednesday, November 02, 2005 11:07 AM
            Subject: RE: [Bioethics] Invitation to Sign: Statement of Common Principles

            Believe me, I also admire diplomatic organizations such as NDY, and realize the uncomfortable position they have working to build a co-ordinated united front. The more organizations as well as independent activists who can unite together the better, to show our force of numbers behind necessary paper-work to shutdown euthanasia passively.
             
            Concerning ARC, I'm not personally involved with any groups. But after reading this second post from you to Stephen, I loaded ARC's website. http://www.thearc.org/  Maybe one reason they don't agressively fight against euthanasia or assissted suicide, is because of some of their sponsors. After Terri Schiavo's final death on March 31, I did some dirt digging, and learned how much control the Church of Scientology wields in the Culture of Death. It turned out, that Scientology owns many real estate and insurance companies. Whether Mutual is controlled by Scientolgy, I don't know. But organizations on sponsorship have to follow their sponsors' wishes, just like the newspapers do.
             
            -----Original Message-----
            From: Bioethics@yahoogroups.com [mailto:Bioethics@yahoogroups.com] On Behalf Of Kathy
            Sent: Tuesday, November 01, 2005 8:58 AM
            To: Bioethics@yahoogroups.com
            Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

            Steven,
            My local Arc and State Arc would not even submit an email to their lists for a protest of Cranford/Schiavo here in Minnesota-just location and information.  I do not think that that they have even emailed this very statement to their listserv.  Minnesota Arc has completely stayed out of it, no stance, no comment, no nothing.  And, I think that even Arc US has been "behind the scenes" in this rather than forthright and out so to speak.  My son has profound mental retardation (since birth), and I have considered myself an advocate and Arc member (10 years), up until the Schiavo incidence and the Arc's silence.  I consider this entire debate to include who and how we are going to value or not value my son's life, so it is really quite personal for me.  I view the world in the light that my son provides. 
             
            I am not much for trade-offs in life, and I don't like the middle of the road.  Somehow, that has never worked for our family. 
             
            I do however, appreciate the efforts made at consensus building.  I appreciate the ability that others have to negotiate.  I appreciate mostly the work of Not Dead Yet.
             
            Thanks,
            Kathy Minnesota
            ----- Original Message -----
            Sent: Monday, October 31, 2005 11:26 AM
            Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

            In a message dated 10/31/2005 8:34:29 AM Central Standard Time, kitkat24@... writes:

            I had a few thoughts in regards to the statements too.  I must say that I was at least semi-satisfied that Arc had signed onto anything that addresses the issue of euthanasia that have cognitive disabilities.  I have been so disappointed that a group that was initiated by parents to address issues related to persons with mental retardation has side-stepped this significant issue.


            First,

            the *national* Arc has had pretty strong positions on euthanasia through withholding
            of treatment for over 15 years.  The state chapters don't always pay attention or
            agree with those positions - the same goes for the Arc's stance on community
            inclusion and opposition to aversive "therapy."

            Second,

            this statement is the result of a wide arrange of players.  It is not as radical as
            several of us would have liked.  But the idea is to get as many organizations as
            possible to take a stand and to get it on their collective radar.

            It does not prohibit endorsers from advocating from stronger stances as as
            individuals or organizations.

            Consensus statements represent a series of trade-offs.  Make the language too
            strong and specific and no one signs on.  Make it too vague and broad and it's
            meaningless.  We tried for the best balance we could achieve with the players
            we had.

            The other issue, of course, is time - we could work on this for *months* and still
            have people dissatisfied with the product.  In the meantime, folks like the Hastings
            Center "gang of four" will be doing their Congressional briefings on the topics.
            They're doing one on Nov. 10th in a Congressional office building.

            We can pretty well assume the disability community's concerns over what
            they're calling "end of life" matters will be ignored or misstated.

            --Steve

            Stephen Drake
            Research Analyst
            Not Dead Yet

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            Checked by AVG Free Edition.
            Version: 7.1.362 / Virus Database: 267.12.7/156 - Release Date: 11/2/2005


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          • COULTERDL@aol.com
            I would also add that the Arc has had a position statement opposing euthanasia and physician-assisted suicide for at least the past 5 or 6 years. They led
            Message 5 of 14 , Nov 4, 2005
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              I would also add that the Arc has had a position statement opposing euthanasia and physician-assisted suicide for at least the past 5 or 6 years.  They led the way on that issue and remain committed to it.
               
              David Coulter
            • Kathy
              I think having a position statement in opposition to euthanasia and PAS is a good thing. However, the Arc was silent during the entire Terri Schiavo
              Message 6 of 14 , Nov 10, 2005
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                I think having a position statement in opposition to euthanasia and PAS is a good thing.  However, the Arc was silent during the entire Terri Schiavo situation.  How did their position statement help Terri ?
                Kathy Ware  
                ----- Original Message -----
                Sent: Friday, November 04, 2005 3:44 PM
                Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

                I would also add that the Arc has had a position statement opposing euthanasia and physician-assisted suicide for at least the past 5 or 6 years.  They led the way on that issue and remain committed to it.
                 
                David Coulter
              • sndrake@aol.com
                In a message dated 11/10/2005 2:15:19 PM Central Standard Time, ... I have said this before and I ll say it again... The Arc was *not* silent during the
                Message 7 of 14 , Nov 10, 2005
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                  In a message dated 11/10/2005 2:15:19 PM Central Standard Time, kitkat24@... writes:

                  However, the Arc was silent during the entire Terri Schiavo situation.

                  I have said this before and I'll say it again...

                  The Arc was *not* silent during the Schiavo situation.

                  The Arc joined NDY's amicus brief in the Robert Wendland case:

                  http://www.notdeadyet.org/docs/wendbrief.html

                  AAPD, UCP and The Arc issued a joint statement on Schiavo in 2003:

                  http://www.aapd-dc.org/News/aapd/terrisupport.html


                  And then there is the more current involvement I posted earlier.

                  There is a difference between "being silent" and "not being heard."

                  Stephen Drake
                  Research Analyst
                  Not Dead Yet
                  7521 Madison St.
                  Forest Park, IL 60130
                  708-209-1500
                  http://www.notdeadyet.org
                • Kathy
                  They did sign onto the brief, but how did the Arc use their status to help Terri? I believe that they could have been more helpful and in the forefront of
                  Message 8 of 14 , Nov 10, 2005
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                    They did sign onto the brief, but how did the Arc use their status to help Terri?  I believe that they could have been more helpful and in the forefront of this battle.  Why is it that Not Dead Yet was one of the only disability groups to advocate without fear?

                    IN THE SUPREME COURT OF THE STATE OF FLORIDA

                    JEB BUSH,

                    Governor of the State of Florida,

                     

                                       Appellant,

                     

                    CASE NO.:          SC04-925

                     

                    v.

                     

                     

                    MICHAEL SCHIAVO, as Guardian of

                    the Person of THERESA MARIE SCHIAVO,

                     

                                       Appellee.

                     

                     

                    BRIEF OF AMICI CURIAE NOT DEAD YET ET AL. IN SUPPORT OF APPELLANT AND REQUESTING REVERSAL

                    (Full listing of Amici on inside cover)

                     

                     


                     

                    MAX LAPERTOSA*

                    KENNETH M. WALDEN*

                    ALIZA KALISKI, LAW CLERK

                    ACCESS LIVING

                    614 West Roosevelt Road

                    Chicago, IL  60607

                    Tel:  (312) 253-7000

                    Fax:  (312) 253-7001

                     

                    GEORGE K. RAHDERT

                    FBN:  213365 / SPN:  0058975

                    RAHDERT, STEELE, BRYAN & BOLE, PA

                    535 Central Avenue

                    St. Petersburg, FL  33701

                    Tel:  (727) 823-4191

                    Fax:  (727) 823-6189

                     

                    Attorneys for Amici


                     
                     

                     

                    ORGANIZATIONS JOINING AS AMICI CURIAE

                    NOT DEAD YET

                    ADAPT

                    THE ARC OF THE UNITED STATES

                    (formerly the Association for Retarded Citizens)

                     

                    CENTER ON HUMAN POLICY, SYRACUSE UNIVERSITY

                     

                    CENTER ON SELF DETERMINATION

                     

                    DISABILITY RIGHTS CENTER

                     

                    FREEDOM CLEARINGHOUSE

                     

                    HOSPICE PATIENTSÂ’ ALLIANCE

                     

                    MOUTH MAGAZINE

                     

                    NATIONAL COUNCIL ON INDEPENDENT LIVING

                     

                    NATIONAL DISABLED STUDENTS UNION

                     

                    NATIONAL SPINAL CORD INJURY ASSOCIATION

                     

                    SELF-ADVOCATES BECOMING EMPOWERED

                     

                    SOCIETY FOR DISABILITY STUDIES

                     

                    TASH

                    (formerly The Association for Persons with Severe Handicaps)

                     

                    WORLD ASSOCIATION OF PERSONS WITH DISABILITIES

                     

                    WORLD INSTITUTE ON DISABILITY

                    ----- Original Message -----
                    Sent: Friday, November 04, 2005 3:44 PM
                    Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles

                    I would also add that the Arc has had a position statement opposing euthanasia and physician-assisted suicide for at least the past 5 or 6 years.  They led the way on that issue and remain committed to it.
                     
                    David Coulter
                  • Sadler Karen
                    Stephen, How true. As a deaf person, I know that the deaf culture is tired of that very same thing Being silent versus not being heard. Over the past
                    Message 9 of 14 , Nov 12, 2005
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                      Stephen,

                      How true. As a deaf person, I know that the deaf culture is tired of that
                      very same thing "Being silent" versus "not being heard." Over the past
                      thirty years many of us deafies have tried very hard to make our voices
                      heard, to the point of learning to speak when ASL is their primary language
                      (case in point Marlee Matlin), pushed our ways through a school system that
                      still does not welcome us either in primary schools or in post-secondary
                      universities, etc.

                      I allowed myself to get very discouraged this year over several fronts
                      including the lack of anything happening right in bioethics and the
                      disabled...but I know from so many of my deaf friends, that there are too
                      few of us trying to make our voices heard for me to back off, even in
                      bioethics. If I do, the continued high infection rate in the deaf culture of
                      HIV will continue, the murder and abuse of deaf and hard-of-hearing patients
                      in hospitals and hospices will continue as no effort is made to provide
                      adequate trained interpreters to provide accurate information to the deaf
                      and to the doctors, and in times of crises such as Hurricane Katrina, the
                      deaf and HOH will continue to be one of the populations at the greatest risk
                      because they are poor, unable to find jobs, put in segregated and wrongfully
                      institutionalized, and they must depend upon others for information. As per
                      usual, a great many deaf people died during these storms....from sheer lack
                      of information.

                      Forgive my rant. ARC did sign those petitions, I remember seeing their
                      signature. Continue with your good work Stephen...

                      Karen



                      Karen L. Sadler
                      Science Education
                      University of Pittsburgh

                      "I am only one; but still I am one. I cannot do everything, but still I can
                      do something; I will not refuse to do something I can do."
                      -Helen Keller

                      "You know, sometimes it is the artist's task to find out how much
                      music you can still make with what you have left."
                      -Itzhak Perlman





                      >From: sndrake@...
                      >Reply-To: Bioethics@yahoogroups.com
                      >To: Bioethics@yahoogroups.com
                      >Subject: Re: [Bioethics] Invitation to Sign: Statement of Common Principles
                      >Date: Thu, 10 Nov 2005 15:24:07 EST
                      >
                      >In a message dated 11/10/2005 2:15:19 PM Central Standard Time,
                      >kitkat24@... writes:
                      >
                      > > However, the Arc was silent during the entire Terri Schiavo situation.
                      >
                      >I have said this before and I'll say it again...
                      >
                      >The Arc was *not* silent during the Schiavo situation.
                      >
                      >The Arc joined NDY's amicus brief in the Robert Wendland case:
                      >
                      >http://www.notdeadyet.org/docs/wendbrief.html
                      >
                      >AAPD, UCP and The Arc issued a joint statement on Schiavo in 2003:
                      >
                      >http://www.aapd-dc.org/News/aapd/terrisupport.html
                      >
                      >
                      >And then there is the more current involvement I posted earlier.
                      >
                      >There is a difference between "being silent" and "not being heard."
                      >
                      >Stephen Drake
                      >Research Analyst
                      >Not Dead Yet
                      >7521 Madison St.
                      >Forest Park, IL 60130
                      >708-209-1500
                      >http://www.notdeadyet.org
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