Hi Yvonne,

I'm not concentrating well this morning at all, so I'll make this short.  I'm
in so much pain and slept so lightly last night that I just can't seem to get
my thoughts together.

I can't speak for anyone else, but you certainly have not offended me.  I
read all that you shared about Joseph, and was touched to have the
opportunity.

Before I say anything else, perhaps I should apologize -- sans excuse -- for
having shortchanged the Canadian media.

It seems to me that a discussion about right-to-life/death with the
disability factor amongst those in the disability community is a different
thing from the same topic of discussion in the non disabled world.  We are
us, and they are uh...well, not.

Parents of minor children have to do the best job they can in making
decisions for their children, and their rights should be respected as well.


Non disabled people (I'm not talking about the parents) don't seem to do an
accurate job when it comes to assessing the disabled person's quality of
life.  They don't seem to have the same regard for us that we have for
ourselves.

All in all, I don't think it's a good idea for Robert Latimer's act to be
portrayed as a merciful one.  Even if that's what he intended, the public
won't get the whole picture.  It will just add fuel to some very bad
misconceptions that already exist.

Betty

In a message dated 10/31/2000 4:54:40 PM Eastern Standard Time,
[log in to unmask] writes:

> I hesitate to post this as I don't wish to offend or alienate anyone, =
>  but...
>
>  I also followed the Latimer case here in the press. Even when I was lost =
>  in the "AB pit of ignorance" (smile) B.C. (Before my Children). I would =
>  have to disagree with you, Betty. Because our murder rate is so low in =
>  this country compared to yours pretty well all crimes of this nature get =
>  national news coverage. From the beginning the media presented both sides =
>  of the controversy : "murder" or "mercy killing". Disabled Rights =
>  Activists here have been very focal in the main stream press. As have =
>  Latimer family supporters. The lack of resources has certainly been an =
>  issue in my local papers. I live in the Capital. In a country that prides =
>  itself in our social services network (albeit flawed) the lack of services
=
>  has been a big part of the debate. Every Canadian has the expectation =
>  (good or bad, right or wrong) that if we need help, our government =
>  programmes will be there. I remember when the Latimer story broke, much =
>  discussion centred on "How could this happen?" Not just Tracey's death but
=
>  also "How did this family get to this point?" "Where were the supports =
>  that are supposed to be there?" I followed a news group for a while that =
>  debated the issues surrounding this case. By and large the people who =
>  condemned Mr. Latimer had the naive notion that if he had just asked for =
>  help it would have been provided. Not true in rural Alberta. And resources
=
>  still would not have relieved Tracey's pain and suffering. If that was the
=
>  true reason for Tracey's death (and only Robert Latimer knows for sure) =
>  then all the money, support, resources, etc. in the world would not have =
>  made any difference!
>
>  This issue touches me on several levels. As you all know our son Anthony =
>  has CP. He has moderate spastic quad CP with a mild speech delay  and is =
>  otherwise a healthy, typical 3 year old. :-)
>
>  I don't often speak of our son Joseph, Anthony and Robert's triplet =
>  brother, who died when he was 20 months old. Joseph suffered severe brain =
>  damage, probably related to a poorly formed placenta and restricted cord =
>  flow in utero. The extent of the damage was not apparent until he was =
>  almost 2 months old. Along with multiple medical issues he had severe =
>  spastic CP, cortical blindness, severe cognitive impairment, seizures (up =
>  to 35 in a row, several times a day, never well-controlled with meds).=20
>
>  He was a sweet, special  little boy  who recognized his Mommy and Daddy =
>  and who learned to smile and had a wonderful husky little giggle. I feel =
>  privilege to have known him and to have been his Mom. There is not a day =
>  that goes by that I don't miss him and wish I could cuddle him one more =
>  time.=20
>
>  But Joey's life was not pleasant as much as we tried to make him as happy =
>  and comfortable as possible. The spasticity in his legs was causing his =
>  hips to be pulled out of their sockets. Daily stretching was torture for =
>  him. Often we would have to pry his legs apart to put a diaper on him. He =
>  was facing several painful orthopedic surgeries to try to correct this =
>  problem with guarded long term prognosis.=20
>
>  His seizures frightened him and made him cry. The seizure meds caused him =
>  to be lethargic.=20
>
>  He had gastric reflux which caused him pain. The meds for that caused =
>  cramping.=20
>
>  His lungs were badly scarred from being ventilated and on oxygen for so =
>  long. He hated wearing the nasal prongs and his little nose got so =
>  irritated at times. He was on supplemental oxygen at home and often needed
=
>  suctioning to breathe.=20
>
>  He couldn't co-ordinate to breathe-suck-swallow so even the pleasure of =
>  eating was denied him. When he had a feeding tube put in at 14 months of =
>  age we had to fight to have him medicated for pain post-op (the
anaesthesio=
>  logist didn't want his respirations to be suppressed by the pain meds, but
=
>  was okay with an infant being in agony). I cannot begin to describe the =
>  feeling when he looked at me as if to say "Mommy why don't you make this =
>  better?" and I could do nothing. His g-tube site was often irritated to =
>  the point of bleeding despite all our efforts to keep it scrupulously =
>  clean and dry.
>
>  On top of everything else, Joey's immune system was very poor. As much as =
>  we tried to protect him he was continuously coming down with respiratory =
>  viruses and needed to be hospitalized for weeks at a time.  He eventually =
>  developed a croup-like virus that his body just couldn't fight anymore. At
=
>  that point we stopped all the suctioning and invasive procedures and had =
>  to let him go. My heart broke that night and I will never again feel total
=
>  joy and peace because one of my babies is no longer with me.
>
>  Earlier, when we knew the extent of Joey's brain damage, we made the =
>  decision no parent should ever have to make and opted for a Do Not =
>  Resuscitate (DNR) order so that if he were to go into respiratory arrest =
>  for whatever reason, no heroic measures would be taken to prolong his =
>  life. My husband and I both felt that it would be an act of love for us to
=
>  let Joey go if and when his time came. And our grief over his death has =
>  been tempered by relief that he no longer suffers in this world.=20
>
>  I don't know if I could ever have made the decision Robert Latimer made. I
=
>  thank God I never had to. But as a parent who watched her child suffer =
>  pain and indignity on a daily basis with the knowledge that it could only =
>  get worse and not better, I can understand that kind of compassion and =
>  mercy.=20
>
>  Not all people with disabilities can enjoy the quality of life that most =
>  of you enjoy - and I say that with full awareness of the physical and =
>  emotional pain many of you experience. My Joey would never have been able =
>  to join your world. There are many out there too disabled for people =
>  beyond their own families to know or care about. That is the sad reality. =
>  Disability rights are wonderful and essential but right to quality of life
=
>  comes first in my opinion. As the Mom of two children with special needs =
>  from two very different points on the continuum, I have a bit different =
>  perspective perhaps. I would never consider a DNR order for Anthony - he =
>  has a great life ahead of him - I know this in my heart.=20
>
>  I am just sharing my opinion here and a different perspective. My point is
=
>  to share my feelings and foster some discussion, not to offend anyone.
>
>  Yvonne
>
>